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Discussion 3.1: Person and Family-Centred Care – Meeting Individual Needs

over 1 year ago
CLOSED: This discussion has concluded.

In your experience what needs are most important at end of life? If you are a person living with a life-threatening illness, or a caregiver, how well are these needs being met?

If you are a health care provider, how do you help meet these needs?

This consultation is now closed. 


  • tmiller about 2 years ago
    At end of life, for parents of a child at end of life, it is vitally important to have health care providers that have 1) knowledge of pediatric palliative care, the complex pain/symptom management that often occurs with a child/youth dying 2) support for the whole family: parents and siblings of a child dying 3) and finally the option for this support at home at end of life. The majority of home services in palliative care are for the adult population and as the nos. are small for the pediatric population, resources have not been implemented to give and support end of life care in the home for children/families. At Canuck Place in Vancouver we have implemented, as much as possible with limited resources to support end of life care in the home throughout the province, through home visiting in the lower mainland and by occasional visits to local communities, meeting with parents/health care providers. A 24 hr line is available to families for all children/youth and phone/video regular contacts by pediatric palliative care experts support families as well throughout their journey and then at end of life. A Family Needs Study interviewed 60 families in BC, and heard from families the importance and option of end of life care in the home. It is not always possible due to complexity/intensity of services needed and families capacity/desire for this, but when families want this, and they get the support for their child to die at home, the parents have expressed how important it has been to them and to the whole family. This Family Needs Study, done a few years ago, is available , it speaks to the needs/wishes/gaps/ access issues, etc. that families experience in the province of BC, but I suspect in every province as the issues are common.
  • JusticeinDying about 2 years ago
    I believe early and consistent conversations that support a bio- psycho-social- spiritual lens of care for person and family is critical.
    As a society I believe we need to strengthen this focus to consider a more creative, engaging and collaborative way to care for our frail elderly and those who are dying & grieving.
  • Tia about 2 years ago
    For many people MAiD is an appealing option and I understand why. But I would hate for anyone to feel pressured into accepting MAiD against their conscience and will because their financial situation or worse, their insurance company's bottom line -or lack of insurance- won' t cover end of life care other than the a more expedient MAiD. All care and attention must go into making sure that a real, viable choice is available to all if we want people to feel valued, safe and cared for until death.
    The needs of the terminal patient and their support system must have access to physical, emotional, psychological, social and spiritual support during and immediately after the person dies. We need people/volunteers trained to walk alongside the bereaved and help them know what comes next, what are the next decisions that need to be made.
    Also, separating elderly couples because one or both need palliative or hospice care seems cruel and unusual punishment. They need a way to access each other, especially if they draw peace and comfort from being together.
  • communityoccupationaltherapy about 2 years ago
    Symptom control, comfort, and support. The client and family need to know who to turn to when new issues arise, how to access different services they may need whether it be spiritual or physical, and the client must have their symptoms under control so that they can enjoy time with their loved ones. As a health care team we need to ensure that the client and families needs are met emotionally, physically, and psychosocially which requires an interdisciplinary approach. Communication amoung the team is key in order to communicate needs as often the family will forget to communicate needs to all professionals due to how overwhelming their situation may be.
  • Support4u about 2 years ago
    In my experience while my husband was in Palliative Care no one ever addressed the fact that he was dying. I was worried about his state of mind as I witnessed him getting more and more depressed. I had to scramble to find someone to come and talk to him. I found a psychiatrist and then a chaplain in the hospital for him. They were both helpful but I had to pull strings to get the psychiatrist to visit him. No one offered or suggested that I needed help but I knew I was a mess. I moved heaven and earth to get him into a Hospice it became a game changer as there was a social worker there to help him. I knew my husband was sad, fearful, worried about his kids and grandkids when he was dying but asking for help seemed like an imposition to those in working in Palliative Care who complained about their workloads. When you or your loved one is dying you really don't want to hear about someone else's problems with their workload. In the Hospice there was more attention to us as a family as well as attending to my husbands's pain and state of mind.
  • Compassion about 2 years ago
    For all people at end of life, whether dying at home, in a hospital, a hospice or a residential care facility, holistic care must be given that includes adequate symptom control but also psychosocial and spiritual care. This should be for both the person dying and for their loved ones. Our present health care system provides this 'holistic' care in a hospice setting but as a palliative care nurse, there are so many time constraints and money constraints that prevent truly 'holistic' care in other settings. A person dying at home, in hospital or in a residential care setting who do not have loved ones who can stay with them or have loved ones who are in distress, should have 24 hour trained volunteer support and 24 hour access to expert palliative care support when this is needed. The Federal and Provincial Governments need to support volunteer organizations with grants and other incentives so that with adequate training, these volunteers can fill in the many gaps that our present system manifests. As expressed by others, having an experienced, caring and compassionate volunteer able to support the dying person and their loved ones can make a huge difference in how the end of life experience is remembered be the loved ones left behind. When a person and their loved ones choose to die at home, there needs to be 24 hour palliative care available for the unexpected situations that can arise. Often the distress of family caregivers is with the lack of sleep and the burden of symptom control through the night hours which lead to burnout and hospitalizations.
    The present home health system in our province does not have the funding or human resources to provide 24 hours palliative care support to people at end of life in settings other than the hospice setting and there are inadequate hospice beds available for the end of life population living in their catchment areas.
  • pcsbv about 2 years ago
    One thing I have noted in a number of situations involving friends who were dying, is that those responsible for overseeing the care of the patient do not always recognize when the time has come for care at home to move to care in a residential hospice. Such a move is often viewed as failure by the patient, the family and professional caregivers. Failure to recognize the right time puts a terrible strain on the caregivers both physically and mentally, results in unnecessary distress for both and multiple visits to hospital for untoward events that could have been handled in a residential hospice. Also the focus at home becomes practical care to the detriment of the calm and comforting interactions that should mark the end of life. Later some of the caregivers have commented that the last few weeks at home were very distressing compared to the tranquility of the last few days spent in a residential hospice. Most telling was the comment of a friend being cared for at home who said that he had gained a good nurse (his wife) but had lost a companion. Excessive extension of care at home when that is no longer appropriate is not good end-of -life care. Nor is it failure to use the facilities of a residential hospice when that is appropriate.
  • bjpalliative about 2 years ago
    Symptom control is everything. Without it, family relationships, and relationships with friends and neighbours suffers. Once symptoms are relieved, well, living again can begin. At the end of life, most people really want to be with those they love and everything should be done to help that happen, even if it means providing some travel funds to have family come and visit. Caregivers also need respite from their exhausting duties, so providing volunteers in the home to help out, or allowing an admission to a hospital bed (there are no hospice beds in rural Alberta) to give the caregiver a rest is almost mandatory. Without these people, what a mess the health care system would be in! We should do everything we can to support them, whatever they need (take them to a concert, take them to a play, take them to a hockey game!).
  • bg about 2 years ago
    Having in mind that the patient I take care for is a PERSON with all that this involves: feelings, fears, different types of needs (physical, spiritual, psicological, social, etc.). Knowing the person we are caring for is essential at least if he/she wants to be known by the profesional.
  • hospice about 2 years ago
    Person-centered care is an essential part of all heathcare delivery, including and especially palliative care. Delivering care
    that is culturally appropriate and sensitive to the social, spiritual, and psychological needs of patients at the end of life is
    essential for all Canadians to access a ‘good death’.
    Barriers include lack of support and information for caregivers, particularly financial support for family caregivers who
    may be responsible for a loved one whose illness and care are impacting their income. Cultural and emotional literacy are
    also extremely important for caregivers, and access to information, tools, and educational supports can reduce feelings of
    isolation for both caregivers and patients and improve the quality of the care provided.
  • Maryisarat about 2 years ago
    What's important at the end of life is for the person to know they are loved, cared for, safe, that they mattered, that they are forgiven (if they are worried about that) and kept pain-free as possible. My mother-in-law, my favourite uncle, my father...I am so grateful they all died with dignity and in peace. All three lived in large urban centers, had the same doctor for years managing their medical issues, and had family close. I wish the same for everyone. I know many are not so fortunate.
  • miserator about 2 years ago
    What is important at end of life is whatever the dying person says is important, and this might change from minute to minute or day to day. What family and friends say is important is also important providing it fits within the patient's goals of care.
    WE ask, ask and then ask again, "what is important to you right now and what do you need me to do, or want me to do"
  • HPCReady about 2 years ago
    Because every person and family is unique and multifaceted we use the CHPCA’s Domains of Issues as a framework to guide whole person assessment. Palliative care assessments, including symptom assessments, are comprehensive and focus on quality of life. That said, we can be limited in the services to refer a person/family to if they fall outside of the “prognostic” timeline. If you are an individual with a diagnosis of an illness that is relatively straightforward to prognosticate, you can often (thought not always) access the services you need), but because in Ontario, funding for “palliative care” is limited to the months/weeks before death palliative care services are still very much about “end of life care” rather than a early identification of palliative care needs and implementation of a palliative approach to care.
  • musictherapist about 2 years ago
    Of course, having excellent medical and nursing care available is the primary concern. However, once the main physical symptoms are addressed, how can we help people stay connected to what is most essential to them? As a certified music therapist, I strive to find ways that music-based interventions will help people relax, find and share beauty and/or memories with loved ones, express what is difficult to put into words (ex: through song), access and express spirituality, improve mood, etc... Music crosses all ages and cultures, and provides a wonderfully flexible tool to help create meaning. I wish music therapy were more universally available, especially in home care settings!
  • Wolfie about 2 years ago
    I need to be able to access physician-assisted death at the time of my choosing. I Don't need other people telling me I'm not sick enough or that I have so much to live for. I deserve a dignified and non-stygmatized death when I'm ready for it. We could save millions in health care costs if we gave people the choice of a pain-free death.
  • canadiangirl95 about 2 years ago
    In my experience, competent, flexible, well trained support in the home is essential.
    I wish I had a dollar for every call I receive as a social worker in community palliaitive care where care givers are stressed and tearful due to scheduling mishaps, workers who refuse to fill their alloted time with tasks for the client/family, paying more attention to the cell phone, etc.

    I realize that personal support is NOT easy but my view is that if one chooses a profession to pursue, then do it to the best of one's ability. Conversely, families can be demanding and unreasonable. There needs to be more on the spot supervision to ensure that relationships are running smoothly and care plans reflect current patient needs, and are being completed appropriately.

    We now have a Premier who makes a platform on "inefficiencies" in the provincial service system. As far as I'm concerned, he can start at the top and work his way down. Why should a CEO make $500,000 per year while there is a wait list for seniors for personal care needs?? This is outrageous! UNTIL everyone is getting their "weekly" bath on health care wait lists, there should be NO salary increases at the top.

    Depending on family care givers to hold up the home based care system is like a house of cards if the care giver is burning out and ill themselves. The loved one gets sent off to hospital, and is subjected to stress and potential mistreatment for daring to be there. THEN the individual has to wait for long term care and is pejoratively called a "bed blocker" to boot.

    Hospitals will brag on endlessly about high tech health initiatives - command centre, new apps for access, etc, BUT where in God's name is the CARE?? Who has built a brand around compassion, kindness and understanding?

    I sound quite cynical, but this has come from 25+ years seeing my elderly and mortally ill clients cope with a system that has turned its priorities upside down.

    Our agency crafted a funding proposal based on the REAL hands on needs of our clients, and we were told that our vision was "not broad enough". Sure enough, the winning ventures all addressed care technology. For some reason, my care givers who need assistance with meal preparation, laundry, changing sheets, feeding, are less enchanted with a new app. If they even know what that is.

    This is not my personal experience as a breast cancer survivor now in remission. My care was magical compared to most of what I have seen over the years as a practitioner, and I am grateful.

    However, I can and do advocate for myself. What about those who cannot? Who can mediate the stress in the system?

    What happened to basic care given in a helath care system where standards meant something and quality service was valued?
  • monkeymom about 2 years ago
    The most important need is care for the caregiver so he/she is able care for a loved one for as long as needed without burning out. For the "patient" the most important need is freedom from pain of every kind - physical, emotional, mental and spiritual.
  • Aware about 2 years ago
    I feel that the most important need at end of life is to have an adequate Palliative Care system, that is timely available not only in institutions, but also, for requested, suitable cases, AT HOME.
    Adequate meaning that it includes a well trained professional team that is easily accessible, at all levels, in order to communicate in time, between them, with patients and love ones; it ought to be compassionate, supportive, respectful and ready to provide acceptable comfort to their patients. Comfort should be acceptable, if it provides complete patient's satisfaction of symptoms relief, e.g. pain, mental distress, etc.
    Company to the patient, should be part of the support provided and ought to be confirmed, not only in institutions, but also that is provided if the patient is at home.
    Lastly, but not least, care will be incomplete if it does not respect and provide satisfaction to the patient's wishes. Physician assisted death is an option that MUST BE AVAILABLE for those who opt for it. Adequate training to the medical team is essential and timely and easy referral available, if required.
    At present, the above needs are met inconsistently around this great country of ours and further training and education at all levels, including the general population, is required.
  • Mom about 2 years ago
    End of life: my dad the primary caregiver of my mother was put verbally put down for support & separates from his wife of almost 70 years of marriage. That was when it came home to me what a heartless society we live in
  • Sherry Moran about 2 years ago
    The most important thing to me at end of life will be to have choices about medical treatment as well as the possibility of a medically assisted death. In other words, I want to be treated with dignity and respect which includes allowing me to leave this world on my terms.
  • CCBB_1544 about 2 years ago
    Comfort and the dignity of the person dying needs to be paramount. In my opinion, this is not being well-met. Wishes of the person dying, or their Power of Attorneys, often children or close family members, need to be respected and listened to.
  • HPCnurse about 2 years ago
    That is such a huge question.
    One of the frameworks that helps me when I am with someone who is dying is the CHPCA Process of PRoviding Care. That process, reminds me to assess, to share information in a way that the person wants and is able to receive it, support informed decision making, and only then to plan care. Toooo often we start planning care without knowing the person/family preferences/goals. And too often we ask about goals and preferences before we share information!
    The final steps include providing care, and then confirming or evaluating if the care met the person's needs.
    It is important to not only assess the common issues, but also to assess how to best share information, how to best support decision making, and how to involve the person/family in care planning....

    The needs that are the most important are those needs that are important to the person, those needs that present themselves in the moment.

    How well are the needs being met? That varies according to where the person lives, what resources are available, the competencies of the health care providers etc... It is sometimes determined by postal code (where you live) and other times it is totally random. Hence the need for a national framework!
  • qualicumgirl about 2 years ago
    As a caregiver of parents at the end of life, I was appalled at the time's up nature of support. Six months in a hospice and you are still alive? Well off you go to a long term care where people are still not trained and resources are still not there and the values aren't consistent with care of the dying.
    If I have a diagnosis of multiple chronic conditions, none of which by itself is terminal but which together spell end of life fragility, then it is at that point that I want end of life...shall we say edge of life...services and supports. Not a lottery of having the right condition at the right place taken to the right doctor to hit the jackpot and get services.
  • Trish about 2 years ago
    I believe a person should be allowed to choose assisted death prior to becoming sick. Currently a dear friend had a stroke that left her unable to swallow and starved to death over 13 days because she couldn’t speak to request assisted suicide. That’s deplorably cruel.
  • gunits about 2 years ago
    In my experience, my father in one province had very good care in every aspect. My mother on the other hand, in a different province had no needs met. Most important i feel is the need for compassionate care, access to someone day or night when things change, someone who can talk you through it. Financial is also important. It took them almost 2 monthes to make my mom pallative, she paid for all her meds even though when the diagnosis was made she was terminal. She was only on a pension. The dr was adamant I take her home and look after her. I am the wage earner in my house, my husband is disabled on a very small pension. I took the initiative as no one referred me to compassionate care benefits. These benefits were barely enough to keep the lights on, never mind the trips to and from hospitals, dr appts, special foods, etc. So in the 4 months she was in my care I spent all our savings caring for her, the kicker was the minute she passed the care benefits stopped. I was back to work 3 days later after doing all the paper work involved and arranging the cremation. Seven months later and I still am battling burnout and grief.
  • @truedignity about 2 years ago
    It is extremely difficult to know when someone will die, so the months, weeks and days take their toll on the health of the family members that are trying to be there around the clock. Having a bed in the hospital room is critical, even still, there is no sleep to be had, with someone who is near the end of their life. Nurses can't be there all the time and have many patients to take care of. It is out of reach to hire private additional care, so family members try to spot each other, but you have to take time off work and then who takes care of the children? We need viable, genuine end of life options for Canadians because it is not reasonable to require someone to slowly starve to death until there's a palliative bed and then they get pain meds while they starve to death. What we ought to have is an ability to share our love and good-byes, to comfort and have a way to be together with the dying loved one in a pre-planned way so they can feel the love before it is just pure physical anguish/agitation/duress. Why can the Netherlands have these options and we have to watch a loved one starve, literally become emaciated before our eyes, with the hospital delivering only a liquid jello that can't be swallowed, while bleeding, soiling themselves, being in duress/physical torture/discomfort, while everyone is wailing, crying, sleep-deprived from weeks, not functioning, stressing from how to get back to work or how to take time off work, how to feed the kids, how to take turns and to take a shower or get clean clothes, while you have no idea if it will be months, weeks or days, and it is going to be repeated for each parent - in our family - that's 8 extended elderly adults (in their 70s), and among us as we approach our 40s and 50s, I don't even think we'll be as lucky as our boomer parents. And my poor nieces - how will they cope- there are even fewer of them (3) to support 8 elderly adults? I want what citizens in the Netherlands have - I want to choose when I will die, and to die with loved ones present in a calm, professionally /medically administered manner, with love and some small ceremony without torturous physical or psychological anguish. I want my caregiver's to not have their health damaged or affected by extensive / lengthy periods of care giving (physical, financial, emotional depletion) and being worn out in terms of their well-being/health. I want myself and my care-givers to have good professional advice about likelihood of treatment, which I think is highly possible and if the Netherlands can do it, why can't we?
  • Jasper about 2 years ago
    Physical comfort (take away the pain) is very important, but so are the spiritual needs - whatever spiritual might mean to that person. Having family (if you have family) near you at all hours, dignity, truth, respect. Kindness, gentleness. Cleanliness. Having your questions answered. Having your family shown respect and care.
  • musicmaven about 2 years ago
    At end of life, the needs of patients and families are diverse. Working as part of an interdisciplinary team, we try to collaborate with each other to help the patient achieve the goals that are important to them (be it pain control, more quality time with loved ones, or coping with their fear and anxiety around death). As a certified Canadian music therapist (MTA) I may support a patient with anxiety or pain through a guided relaxation, or use music to create a peaceful and reflective time for a family during a bedside vigil. Sometimes through music, people can find a way to express or share something that is hard with words alone. It can help start a difficult conversation. The most important thing is letting the patient guide the way as to what is meaningful for them now. In meeting their needs, I am prepared to be flexible in my approach and truly present to them. Many times I have heard patients and families say that they need someone to hear their story, to listen, and be present with them. As a music therapist I feel privileged to have the training and the opportunity to be able to support in this way. I believe more psychosocial spiritual support for patients and families would improve palliative care across Canada.
  • June1964 about 2 years ago
    Both my parents spent their last days in palliative care - two different timeframes, two different places. My father was in a more formal, hospital type of palliative care where the atmosphere was clinical and felt cold. The nurses and doctor were good with the clinical part but not so much the emotional part. Family slept in a chair to ensure that my dad would not pass away alone. My mother went to a hospice run by a charity and it was more of a home setting (church converted to a hospice with beautiful bedrooms) where the doctor talked to us about doing whatever it took to make sure my mother passed peacefully. There was a hide a bed in the room so one of us slept there during her final days. We had access to a bathroom with a shower, a lounge with a fireplace, a kitchen, and were encouraged to decorate the room with things she loved, pictures, etc.. The care workers talked to her while bathing her, regardless of the fact that she was not awake, and then dressed her in a beautiful flannel nightgown, ensuring she was warm and comfortable. When they recognized that her breathing was changing they advised me that it was time and allowed me to hold her hand as she passed peacefully. Even after her passing, as they prepared her to be transferred to the care of the funeral home, they treated her as well as me and my family with the most loving care.
    The difference between the two experiences was night and day. We need more funding for hospices where people can pass away with dignity and loving care in a home like environment. At that point, it really is about that and not so much about the medical part. The waiting list is too long for too few beds in hospice like this.
  • Jnunn76 about 2 years ago
    I am a medical professional. In my experience early intervention is the most effective. When families and individuals are given the resources to discuss end of life care sooner, out comes in terms of meeting needs are met more consistently as we have a better handle on the wishes and dynamics of the situation.
    Further, a stable environment is paramount. Ensuring a family's ability to attend to a loved one free of financial and social worry is very important. As is the resources to include children in the discussions.
    Children are often over looked. \
  • marox2419 about 2 years ago
    At the end of my life .. what is most important to me is that I have no pain, that I have the ability to interact with others, and that I can choose my ending. I, the dying person, am most important. My needs, wishes, etc. should be honoured. A dying person should have options. Because these are currently not met with the legislation in place, let's open it up. Europe has managed this for decades. I realize that we're afraid that it might be abused -- and that may happen. But the needs of the many outweigh the few.
  • Mairy about 2 years ago
    Quality of life is most important. For most people this would mean absence of pain - physical or mental, and some ability to interact with others. Also some dignity and some control over their life. Family and friends need to be supported so they can provide support to those dying. And choice always involve the choice to end one's life.
  • yeold about 2 years ago
    I think the most important needs for the palliative person is the need to have control over anything they possibly can. Medical and personal needs have to be met to be able to stay at home or in hospice/palliative care. I believe it is important that these are funded and supported for all citizens in our country.
  • chadalmighty over 2 years ago
    At end of life, the most important needs for the dying patients are pain control, dying with dignity, and honoring their wishes (if known). This would mean something different in every situation. When our son was dying at home, those needs were partially met but only because of my healthcare background and my ability to advocate for him. We all wanted to stay at home with him as long as possible, which we did until 2 days before he passed away. We were fortunate that I had medical background and was able to manage his medications on our own. Without this ability, we would of had to be in hospital because there was not nursing services available through Homecare to do so. Our whole family (my husband, other son and myself) physically cared for him until the end. This included Morphine administration, turning him in bed, bathing etc. Some people do not have the ability or knowledge to do this. So... if there would be a case manager that would overlook all the family's needs (support, respite) and the patient's needs (medications, care requirements).. that would be of huge support to the patient and family. So to answer the question in this discussion... needs are physical and emotional needs of the dying patient and support needs of the family. That's patient-family centered care which is customized to their specific needs which may change over the course of the dying process.
    Hide reply (1)
    • MAIDadvocate about 2 years ago
      It is another call for community based end of care specialists to provide the social care as needed by the person who is dying and the family, Access to adequate medication to control pain is very important and ought to be included as part of the care process.
  • hopeful caregiver about 2 years ago
    I believe that Individual needs are best met by a well trained interdisciplinary team. Both individuals and their families have psychosocial needs that need to be addressed and supported, but not all teams have the professionals (social workers, counsellors and psychologists) that are trained to offer this support. Equal access to a team and the importance of these professionals on a team to address these issues will better serve the population.Most important at end of life means holistic care and making this support available to all that may need it.
    Hide reply (1)
    • MAIDadvocate about 2 years ago
      Having those with the aptitude and knowledge are invaluable to helping in the dying process - these need to be community oriented and not associated with any health care facility or religion.
  • QueenB about 2 years ago
    When my mother passed away, she did not have access to dying with dignity. She went from 165 pounds to 65 pounds before she finally passed away in a palliative care ward. I visited everyday and helped feed her. Very painful to watch her die a little bit each day. Don’t want other families to have to go through this. Not enough staff to meet the needs of the large number of patients. Need more staff and information to avoid this happening
    Hide reply (1)
    • MAIDadvocate about 2 years ago
      It truly is a horrible thing to do to watch your loved one shrink before your eyes and have to carry that memory forever. I feel so sorry for you especially in a palliative care unit but as I say this, they are not there to help end the misery of a prolonged death.
  • MAIDadvocate about 2 years ago
    I provided care to my mother and no one else in the LTC nursing home had anything to do with her care unless it was to roll her over and change her diaper, then at the end before she died they came and took her own nightie off and put on a horrible "hospital" like gown - so disrespectful - did not say one word to any of the family members there.
    Something is truly missing in LTC nursing homes where people are going to die - guaranteed, but nary a mention of palliative or knowledgeable end of life care for anyone - seems like it was none existent for "old people".
  • Coecat about 2 years ago
    I had a friend who needed palliative but only got it for a short time. I realize that this is probably the time allotted but I think the should be extended and also Cancer drugs that people need but cannot afford should be covered with more money going to the province of Ontario so that these drugs will be covered as well as clinical trials that could be done in the US
  • maddykate2 about 2 years ago
    There are services and equipment through home care however this is often limited. Follow up can be in home or in clinic however not everyone has access to transportation. Additional services are needed to fill in the gaps. We tend to focus on the practical needs not necessarily the emotional needs an individual/family may have.
  • Hukie about 2 years ago
    All terminally ill people should have speedy access to health providers to receive effective management and especially pain control of their conditions. Dealing with personal issues and situations is not really the role of the health care system
  • gtreschow about 2 years ago
    As the areas of patient/family engagement grows I am hopeful that at the right time in their journey people who have experienced bereavement can be part of this process, to work alongside medical staff as a supportive presence. For all involved this would mean a structure and framework that I hope will become a priority in the rapidly growing area of patient/family engagement.
  • Tequilagirl over 2 years ago
    Holistic care needs to be offered / provided including patient and family caregivers
  • mariemcd over 2 years ago
    More education needs to be done to better enable family members to have end of life discussions with family members. Too often, the dying are kept alive by any means possible because the kids and spouses did not receive instructions on when to let them go and they cannot make the decisions on their own.

    Too often as well, Doctors in the hospitals are not telling that families that what they are doing by keeping this patient alive is not only cruel to them, but ineffective as the patient is beyond returning to any form of quality of life and IS going to die.
    Hide reply (1)
    • #livefree over 2 years ago
      i think it is more on "acceptance" on the part of the family. how long they can take and see their loved ones suffering. i understand how hard to make decisions when you are not ready to any thing will happen. then start asking "are you doing this because you wanted to extend his/her life" or are you doing this because you don't wanted to let him/her go?
  • ICareBC over 2 years ago
    Caring, asking, listening to the person and to members of his/her family. What are their feelings, thoughts, fears? What's happening for you at this moment? Would you like to talk about it? What are considerations for different options. For example, will the medication help with pain but make the person groggy? If so... would they rather be groggy and pain free, or experience the pain and be alert? Keep checking in from time to time because the answer can change as the situation changes. For my mom, alertness was important initially because she had things she wanted to say and do. After saying her goodbyes and as the pain became worse, she was more concerned about being comfortable than alert.
    As family, we appreciated both situations. Being able to talk with her, hold her hand, share stories and memories, and laugh... was wonderful at first. Then when the pain kicked in, it was hard to watch. Seeing her resting peacefully gave peace to us as well. She still "woke up" from time to time, smiled and said she loved us, and then would drift back.

    A close friend took a different view, or trying every cure possible until she drew her last breath. Totally opposite from my mom, but her choice. TO me that's what palliative care is all about.
  • David over 2 years ago
    Dignity is the most basic need. In addition to comforting health care, one must be treated with respect and dignity. Ability to be with loved ones at all times of the day or night is essential, whether one is at home or in a palliative facility. For those of faith, access to spiritual needs is especially essential.
    Hide reply (1)
    • SCpracLn over 2 years ago
      Even those without a formal faith or a church/synagogue/mosque have spiritual needs. They have issues around purpose, meaning, hope, legacy. Emotions and beliefs around dying.
  • DANIELLE over 2 years ago
    I am a health care provider. Rural areas are underserved and access to regular nursing visits from nursing agencies and respite severely lacking. Distance affects access to specialized care like palliative radiotherapy as well. We need a tapestry of services, each not at the expense of others. Hospices are fantastic, but specialize in end of life care. People diagnosed with life limiting illnesses with longer or uncertain prognoses do not benefit from these services until 2 weeks prior to their death. So much suffering before then. Investing in home based palliative care with an aim to capacity build is the solution.
    Hide Replies (2)
    • Martyn over 2 years ago
      I am also a health care provider working with a newly formed and provincially funded Palliative Care Community Team at a community based Hospice. Our goal is to provide best possible palliative care for the people diagnosed with a life threatening illness, as well as support for their family and care givers, from the time of diagnosis and extending to bereavement support following a death. This is a recent initiative (three years now) which has not been established in all areas but more of such teams are being added each year. As a community Hospice we do have Hospice beds, though this would be an added level of much needed help. The expense of establishing and operating Hospice beds continues to be almost entirely charity driven. While we support the choice of individuals to die in the home, for some families and individuals, the complexities of certain situations can go beyond their capacity to cope at home given the current level of nursing and other needed health care hours for in home care. At present we coordinate with the local hospital's palliative unit for end of life and have also engaged a team of palliative trained physicians who are willing to fill in gaps for those staying at home (when MRP is not available) to provide 24 hour physician coverage including home visits as needed (including rural areas). While their is still a lot which can be improved upon we see this a hopeful step in the right direction.
      Hide reply (1)
      • SCpracLn over 2 years ago
        "The expense of establishing and operating Hospice beds continues to be almost entirely charity driven." Is this not the truest of statements about hospice care said anywhere on this site. Why is the dignified and specialized place to die privately funded??
  • Fredbatch over 2 years ago
    Having had a relative in palliative care, one of the most difficult decisions was changing from acute care to comfort care. At what point do you stop treating a loved one. Our GP was excellent and helped to guide us through but the staff at the private nursing home did not have a clue. They refused to administer medication to keep our loved one comfortable because they were afraid she would pass. Was that not the purpose of palliative care? This lack of continuity with the nursing home staff and the CCAC staff created very difficult situations for our family.
    Hide Replies (3)
    • Maureen over 2 years ago
      I was a Palliative trained RN . I was determined to care for my husband who was dying from asbestos. When he was admitted to our local hospital in extreme respiratory distress it was a nightmare. Staff and physcians were unfamiliar with meds needed. Drug errors were made. No one came to help me when he was attempting to get out of bed constantly. Yes , they were busy but this was inhumane as he spent 10 days fighting to breathe and getting more and more confused. I hired a private sitter for 3 nights just so I could sleep. The physcian refused to call the palliative specialist in another city who had put him on meds for delirium.There was no pastoral care offered to the family and no follow up at all. I still relive this nightmare everyday.
      Hide Replies (2)
      • FreedomDi over 2 years ago
        HI Maureen,

        I"m so sorry that you had to live this painful experience. It is true that (in my opinion) in the hospital setting (acute care setting) that palliative measures are seen and delivered differently than in long term care. I, like you, assisted my brother, and both my parents at home until they died. I must say, it was a good thing I was a nurse and knew the system to ask and push for things to happen or else it would have not.
        Palliative care Strategy must become a priority in the health care system and be adaptive depending on the health care system, e.g. long term care, home care, hospital care, ect.

      • SCpracLn over 2 years ago
        I am a spiritual care provider in an acute care hospital where there are a few palliative care beds (4 out of 350) and patients are transferred out when they can be moved and when there are spaces in hospice or another hospital with a more defined palliative unit available. Of course my bias is that existential conversations and compassionate listening is an essential part of "comfort measures". Questions of hope, despair, meaning, purpose (of still living while the body is dying) are part of the palliative (non--curative) process and spiritual care is an important service. Yes patients and nurses can confuse spiritual needs (sense of meaning, emotional despair/confusion) with religious needs (prayer and religious sacraments). A person who went to church is not the only one (and actually may not be at all) the person who can benefit from spiritual care as life and dying meet.
  • Redsunset over 2 years ago
    My 17 year old son passed away from brain cancer. He was put in a ward that was all people in their 70's or 80's. This was discouraging for him and uncomfortable. As a youth he wanted to be awake playing his games or watching tv in his room but this disturbed people. He needed a space to "Live" not lay down and give up because nurses were getting upset that he had his tv on past 8 pm. His quality of life decreased drastically due to the level of care required after surgery placing him in the "elders" ward at VGH. Pallative care, people still need to feel alive and happy. This is difficult at this stage but should be a priority. Tears and sadness should be ours for when they are gone. For the days and nights a mother longs to hug her son but he is not there. There are so many stressor for everyone during pallative care. Age appropriate wards and care would be nice. Pain can be managed with medications. The spirit, mind and over all health is effected by theur environment, people around them, health care providers and ability to stay independent and make decision as much as possible.
    Hide Replies (5)
    • Hueman over 2 years ago
      Hence the Importance of caring holistic envioronments where people in advanced stages of terminal illnesses can live, in private rooms with the support of staff adequately trained in comfort care at the end of life such as hospice beds. When care doesn’t benefit anymore from the technology, bells and whistles of acute care hospitalization hospice care does a much better job at a fraction of the cost, also freeing hospital beds to treat illnesses that they can fix.
      Hide reply (1)
      • Annabelle over 2 years ago
        Very well said. I whole heartedly agree
    • FreedomDi over 2 years ago
      Dear Redsunset,

      I feel your pain, that must have been so difficult for your son and for you as a Mother to witness this, at a most difficult time. I"m so sorry for your loss.
      Take care
    • Goldilocks over 2 years ago
      Absolutely,I agree. Palliative are is living your best life till you die. I am surprised that in VGH, such a huge place that they could not accommodate his needs better. What about Canuck Place?’
      Hide reply (1)
      • Redsunset over 2 years ago
        With his brain surgery he needed special care. We did at the end go to Canuck House.
  • sarahpc over 2 years ago
    I have Spinal Muscular Atrophy and am 26 years old (I was not expected to live past the age of 3). As a child, I went to Canuck Place for respite stays and received medical guidance for my health issues. As an adult because I'm not actively dying, there are no hospices I can receive specialized care from. Doctors in the adult world do not know much about SMA because it is a childhood condition and I often have to educate health care professionals about my condition and health concerns. I'm the doctor instead of the patient. As a result, my health is not managed well because the only medical experts of SMA are found in Children's hospitals and I have aged out of the system.
    Hide reply (1)
    • Just3 over 2 years ago
      You are in an interesting situation, wishing you the best in your journey.
  • Rosie Snow over 2 years ago
    Several years ago over 100 people in our city braved a snowstorm to tell our grass roots hospice NGO what they wanted at end of life. They wanted continuity of care providers and supports; home and familiar surroundings, coordination of their care and finally symptom management. Despite having a population of nearly 300,000 our city still does not have a residential hospice. For those who do not have the support to remain at home and are not acutely ill to go to hospital the alternative is long term care. In my city that is true regardless of your age. Many of the hospice board members have visited other hospices across Canada, the US, UK and Australia and have seen shining examples of the way end of life should happen. Home-like environments open 24/7, accommodation for family, home-cooked meals, art and music, continuity of care providers and coordination of care plus symptom management overseen by palliative care physicians, NPs and nurses. Once the pieces of the palliative care system are in place (acute care, long term care, home care, community-based hospice, day programs, bereavement programs) there is a further requirement to work together to promote excellent communication between providers so that regardless of where a terminally ill person is located care and coordination of that care is consistent, reliable and available. Just as Home Care was not supported to the degree it should have been before acute care lengths of stay were shortened and hospital admission criteria tightened, the palliative care system has not been fully supported to provide a viable alternative to many who now consider MAID as their safety net.
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    • NurseDar over 2 years ago
      Dear Rosie. S
      You are right there are shining examples around the world and in many parts of Canada where excellent palliative care is provided in many different settings. Health Canada states the purpose of these discussions is develop a framework so I hope they can draw upon the many good examples already in existence. It seems odd to me that so many health care dollars are spent on initiatives in health care that may or may not be used by many Canadians. The fact remains we will ALL die and most of us will need good palliative care unless we have a sudden death due to tragedy or natural causes. Only some people will die of heart and stroke or cancer or some other illness yet that is where the majority of health care dollars seem to be spent. It's a no brainer......all Canadians deserve and need access to good palliative care.
  • NurseDar over 2 years ago
    I have been a practicing palliative care nurse in the community for over 25 years now. The care I provided with my team is whole person care (physical, emotional, psychosocial, spiritual, practical) to the patient and his or her family and support system. It is all encompassing and based on what is needed at the time throughout the patient and family journey. It is often complex and unpredictable. A high level of skill is required by the team involved to adapt and meet those needs. Continuity of the team members works best if that is at all possible to build a trusting relationship and to follow the ever changing needs. Communication, Time, and the ability to adapt to the changes taking places is key to be able to being able to provide the care.
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    • Rosie Snow over 2 years ago
      I have always been appreciative of highly skilled, dedicated and experienced palliative professionals in my work as a hospice volunteer. However, the sad reality is there remain huge gaps in the system - lack of continuity, poor communication or no communication between providers and the need for "more" than just a 20 minute visit a few times a week. 24 hour access to palliative professionals and home care staff is a huge need if people are to spend as much time a possible in their homes and not be admitted to hospital. Once a person is unable to mobilize easily- the doctor's office is no longer possible for appointments, access to other community resources becomes limited and the only lifeline is your family or friends- if they are around, home care staff ( if you are a client and they take on the communication and fetch roles.)

      We have huge gaps - a lot of Monday to Friday office work that goes on with the ER being the safety net after hours and on weekends.
  • endmatters over 2 years ago
    In my rural community, the service provided by the palliative care team, was wonderful. For two weeks I felt watched over, and cared for as the primary caregiver for my dying spouse. I had a daily visit (could have been twice if I'd asked, and twice daily phone calls, with 24/7 access. When policy makers are creating the new framework - they should already be aware of successful programs in certain innovative communities - and if not - they need to 'take note'.

    Individual needs are different: some patients may want to reminisce, or make amends, or have questions and worries addressed - some - like my own dear husband - just wanted it all to be over. It's not a role just anyone can handle - so dedicated staff is important. In my experience - the health professional who get involved in palliative care - are there because they have something to offer. However, it seems there are not enough of them across Canada. Because death is something every one of us must face - this is not an issue to be relegated to the back burner. It is not an issue for only a small exclusive population. It is an issue for all of us - so adequate resources must be allocated.

    'End of life' care is (or should be seen as) a 'normal' part of life - a time for respect, dignity and comfort, grieving and, yes, celebration. Can we offer all that?
  • eegr18 over 2 years ago
    I cannot stress enough the importance of clear, reliable, information and communication,,.....through one to one sit downs. family meetings, team meetings, ...and clear communication cars care sites...good old fashioned continuity of care so that people do not get lost in the shuffle between home, hospital , PC, H care
    Hide Replies (2)
    • Annabelle over 2 years ago
      I am a retired nurse and have recently embarked becoming a hospice volunteer. There seems to be a lot of confusion using hospice services in terms of the name as palliative care often is attached to this service. There is quite a difference between hospice and palliative care. My friend has recently just died of cancer and I encouraged her to get a referral from her oncologist for hospice services. She told me the next day she was called from her social worker and informed that she had received a referral from her doctor for palliative care. She was devastated as she couldn't understand why she would be booked for the palliative care unit to die when he was still giving her treatment. My training has taught me that in hospice palliative care is a philosophy. In the hospital to people it is a unit and where you go to die. My friend faught hard right to the end refusing to die. She missed the opportunity for visits from a hospice volunteer related directly to the confusion of the palliative word. She and her family would have benifited so much if she would have had the trust of a friendly visitor. I feel any pamphlet that I look at doesn't explain what hospice is very well and actually seems to focus more on dying and support with palliative care. This confusion needs to be fixed as the individual living with a life limiting illness could use hospice right when diagnosed. Their road would be smoother.
      Hide reply (1)
      • endmatters over 2 years ago
        I think much of the confusion around the words palliative and hospice are rooted in the fear of dying. We must begin to view the 'end of life', whether a week long or two years long, as a time to live in dignity and comfort. A formerly strong body may have weakened to the point where assistance is needed - but a palliative patient is alive and part of the normal progression of living.
  • ALH over 2 years ago
    I am a Nurse Practitioner working in the community to provide Palliative care support to patients in their homes, who wish to die at home or stay at home as long as possible and go to hospital/hospice for end of life care. My role is to provide medical/psychosocial support to the patient/family/primary physician/visiting nurses/home care care-coordinators and others involved in the care. The geographical area I cover is large and primarily rural.
    The needs I see most important are:
    - Access to 24 hour Palliative care medical support. Rural primary providers (Physicians and NP's) are more likely to offer 24hr support when their patient is approaching EOL, but 24hr care is not consistent. My program does not yet have 24 hour call available.
    - General public education about providing palliative care support to a loved one at home. Families do not always know what to expect in terms of providing personal care, managing medications, coordinating the care providers schedules, resources available in the community. These discussions need to happen before the caregiver is overwhelmed by the impact of caring for a dying loved one.
    - Consistency in care provision by nurses and PSW's. These are the care providers most intimately involved with patients. It is important that the patient/family are dealing with a consistent team that can communicate with each other about care needs. Our system of contracting out services to agencies does not always facilitate good communication between care-providers or promote the team work that generally improves patient care.
    - Same day response to a patient's/families request for information/support/services, especially as patient is approaching EOL. Service overload of agencies sometimes restricts this.
    - Care providers in the home need to have education and experience related to providing Palliative Care.
    - Equitable access to Hospice facilities as opposed to patient going to hospital for EOL. It is a huge burden on small rural communities to try and raise and maintain funds for Hospice.

    In my role I am able to provide education to patient and families that I am involved with about what to expect, and support their goals, even as they may change during the patient's disease progression. The nurses and PSW's also provide more specific training to families related to personal care and medication administration and it is important this time be supported by employers as an important function when providing palliative care.
    I also facilitate communication of plans of care between primary providers, nurses, and Care Coordinators, however PSW's are not in that direct loop. Improved access to medical and health records by all persons providing care to patients in the home would be very helpful.
    Part of my role is to provide informal education to primary providers and care providers in relation to patients we share. Agencies are now providing training to their staff and this initiative needs to supported financially.

    Providing palliative care support in patients homes requires a responsive support system to meet the changing needs of the patient and their families. Facility and community support agencies need to have policy in place to meet these needs. Changes are occurring through grass roots initiatives in our community and it is important to support and maintain these groups.
  • jo over 2 years ago
    'Dignity and being pain free is the most important along with free access to family at all times (known first hand from what my mother told me during her decline and eventual passing).
    I have seen first hand, that for integral aspects of personal care (hygiene, changing of clothing, meal times), dignity is usually the first aspect to be ignored. When speech is impaired, or the energy/effort to communicate is absent by the patient, the care becomes impersonal and abrupt.

    Respectfully, doctors are solicitous and caring but they are not doing the hands on, daily business of self-care for the patient.
  • yvrpcm over 2 years ago
    Ultimately, palliative care should not be a "thing", it should be just basic, good care for everyone at all stages of an illness. Right now palliative care seems to be like a reward for knowing you are going to die of something that currently ails you.
  • Midnight1217 over 2 years ago
    Rural communities are the biggest challenge. My family member only wanted to die at home, but this was not provided and she ended up dying in hospital. Nursing care was lovely but very minimal. Her spouse gave care that I would describe that only a nurse should be giving. They should have had the opportunity to have significant time together but he was too busy caring for her urgent and growing needs including cleaning up hemmoraging.
    Additionally, this family was very spiritually grounded and Spiritual Care was not offered, nor do I think it was available. That would have truly helped them cope with the situation.
  • Maureen over 2 years ago
    I can’t stress enough that in my opinion you need a doctor and nurses who are knowledgeable about Palliative Care, the meds , and the treatment for Palliative delirium. Education in Palliative Care should be mandatory in their training with updates every 2 years. Along with education is the approach that the family needs compassion and respect . Staff need to realize that the grief and emotional turmoil of the family needs to be addressed for the good of the patient and the family unit. Patients need competent caring staff.
  • cam over 2 years ago
    I think at a person's end of life, knowing that they are being cared for, respected and valued are important needs to be met. A person may need guidance in seeing the value and meaning in their life and that is why care takers (support network) are so important. While doctors and nurses can help with pain and symptom management, these health care providers, along with family, friends and volunteers, need to treat the person living with a life-threatening illness with dignity and respect. More health care workers are needed as well as volunteers who can help support this need.
  • Jennie over 2 years ago
    My husband was in palliative care for 48 hours and my experience was very good.
    I have lukemia and am in remission - I have been told that when it comes back I will not be so lucky. My children will need a great deal of help and care - I hope it will be there for them. I suspect at that point I will not be able to help very much. Care and compassion are very important.
  • DRED over 2 years ago
    In my experience with three of our four parents, what they wanted was honesty, compassion, a listener, someone who would tell them it was OK to go, someone who valued them
  • Paul G over 2 years ago
    In my experience, comfort and freedom from fear, for all of us, but particularly for children. When my grandson died, he did so at Canuck Place in Vancouver, a place we had taken him for respite over several years. As a result, he was not only comfortable in his surroundings, but surrounded by people who knew and loved him. Moreover, as a mini-hospital, Canuck Place was not only able to care for him, but was also able to provide us with a freedom from discomfort as well. Their family centred approach put us all in a place where we could be together and be at peace with his passing with trained counsellors, doctors, nurses, and friends.
  • Marnie over 2 years ago
    Physical, mental, and emotional comfort please. Caring and physical, mental, and emotional support. Unless one has a loved one willing and able to provide this, it is not happening. Care centres are misnamed. Those providing real care in them are in the minority.
    Hide Replies (16)
    • Tesa over 2 years ago
      Yes, I agree that those providing "real care" (including palliative) in facilities are in the minority, especially in private for profit extended care facilities where the owner/operator does not replace sick or vacation coverage so staff are always working (dangerously) short. Caring staff are NOT in the minority, ability to provide "real care" due to these circumstances are the problem.
      Hide Replies (15)
      • Marnie over 2 years ago
        The "ability to provide "real care" due to (such) circumstances (is largely) the problem." Yes, it is true that there are people who really do care even though they are stuck working in such circumstances. However, there is also a serious lack of caring among many of them. I have personally noticed and experienced such lack of caring, especially with nurses, sadly. It used to be that those who became nurses did so because of their caring. Nowadays, unfortunately, too many become nurses not because they care but because of the pay and perquisites provided to them. This is particularly the case at care centres where nurses spend the majority of their time socializing in the staff lounge, other than when they have to do their medication rounds. Meanwhile, the aides are overworked and underpaid, while typically being treated badly and looked down on. And the residents too are too often treated badly and looked down on. I pray that I do not end up in a nursing home as my father and sister and brother-in-law and other friends and relatives have. And palliative care places are not necessarily better.
        Hide Replies (14)
        • yvrpcm over 2 years ago
          My recent experience mirrors this. Most of the nursing staff seem quite disconnected from the patients, while the volunteers (who are not allowed to do anything) seem the most caring. Nurses are not like they were in my young day! Very little practical thought for the patients, which they blame on being overworked and understaffed. throwing blankets on the feet of a patient with a broken back, who has complained of being cold, is not going to make the patient any warmer. Moving the table to take a blood pressure reading and then not putting it back is not exhibiting any basic human care. Neither the doctors nor the nurses noticing that the patient is losing a lot of weight very quickly - no care. Not listening to the family when they report cognitive issues - "She seems fine - your father has dementia and may not be right about her - she's 90 years old." It made my blood boil.
          Hide Replies (5)
          • Marnie over 2 years ago
            Thank you for adding the comment about volunteers. And thank goodness for volunteers, but there are not nearly enough of them, of course. And the more volunteers take on, the more they are expected to take on. Help with eating is a biggie. Too often I have seen those who have trouble eating and who are not being given help simply give up and end up leaving the table without eating - with no one caring. And many end up eating cold meals too, with/without help. By the way, the cognitive issues, more often than not, are due to dehydration. Getting enough fluids into the elderly is difficult and so is just not done. There is often a huge difference between when one is properly hydrated and when one is not. My brother-in-law was a very good example of this.
          • FreedomDi over 2 years ago
            I"m sorry, but this forum is NOT to bash Nurses or the care they provide.
            Please stick to the subject and if you have any issues, talk to the appropriate person.
            Thank you
            Hide Replies (3)
            • camacha over 2 years ago
              FreedomDi - I don't take this as bashing anybody. No one is saying all nurses are bad. These are real problems that people who are caring for elderly loved ones are seeing and experiencing. This is what this forum is for - to highlight what is important, and what needs to change/improve about palliative care.
            • keithmnop77 over 2 years ago
              If nurses are a problem for some people then that problem must be brought up so it can be address. And that is true regardless of your personal experience.

              This is what is on topic, and as you can see the attitudes and effectiveness of paid and unpaid caregivers, managers, etc. and how well we think they meet our needs are explicitly all on-topic:
              "In your experience what needs are most important at end of life? If you are a person living with a life-threatening illness, or a caregiver, how well are these needs being met?

              If you are a health care provider, how do you help meet these needs?"
              Hide reply (1)
              • FreedomDi over 2 years ago
                My Gosh Mr. Keith, you are certainly aggressive in your replies and it would seem like you are targeting my replies. Please move on...
                oh, and you forgot to add: If you are a health care provider, how do you help meet these needs?..... and I think the operative word is "Help" and not hinder the care Nurses provide.

        • Letstalk2018 over 2 years ago
          I completely agree with this. I experienced this with my Dad a few years back. The staff at the care facility were just doing their jobs, and had little care for the patients there. My Dad was so frustrated and it was a horrible experience.
          Hide Replies (3)
          • Marnie over 2 years ago
            (so sad for all concerned) I truly do pray that I never end up in a 'care' centre.
            Hide Replies (2)
            • Martyn over 2 years ago
              I worked as a volunteer and later with a small limited contract for over 20 years in a LTC facility supporting residents and staff with emotional and spiritual care. What I observed was a decline in care over that time which was not driven as much by the staff as it was by the "bean counters" at the for profit corporate headquarters. For instance, one very caring, PSW was threatened with dismissal by management for singing a few Christmas carols on Christmas eve with residents unable to be with family. It seemed she was apparently wasting precious corporate time on needless activity. She had enough spunk to stand up to her administrator but many will not jeopardize their employment when put in such a bind. The poor pay and difficult work environment has negatively affected the quality of care, and more nursing and support workers are in LTC facilities for a paycheck more than for the residents, but the frontline staff are not always the primary cause.
              Hide reply (1)
              • Marnie over 2 years ago
                My friend "LC" worked as an aide in a care centre for a while and she too was taken to task for "wasting time" if and when she actually tried to be good to residents. (so sad)
        • FreedomDi over 2 years ago
          Good day Marnie,

          I"m sorry you had bad experiences from your loved one being in a nursing home. However, I work as a Director of Nursing in a Nursing home and trust me, the care staff here are very caring and empathetic to the residents/family needs. However, I'm not blind to the fact that we do need more care hours to care for our residents and we do need more and better education in regards to palliative care for our staff.

          Hide Replies (3)
          • Marnie over 2 years ago
            Thank you, FreedomDi. Unfortunately, it was not just one loved one; my experiences are in the majority, not the minority from what I have seen and know about, both directly and indirectly. I do agree that there are some good and caring people; but there are not enough of them. (sad)
          • keithmnop77 over 2 years ago
            Don't try to pull rank on patients.

            How would a "Director of Nursing in a Nursing home and trust me, the care staff here are very caring and empathetic" even know what the patients experiences and feelings are?

            And that would be even at your own institution. You know less about what goes one elsewhere across your own province, let alone the rest of Canada.

            We're the patients. We know what our experiences are. Please do not try to hush us up. Please do not stifle the conversation.

            Please do not pull rank.
            Hide reply (1)
            • FreedomDi over 2 years ago
              Mr. Keith,

              I"m not trying to do anything of the sort, was merely stating my opinion as you are doing. I find your reply very aggressive and demeaning the my person. And to stipulate that I don't know what the patients/residents feelings are is insulting to say the least.
              I"m not on this forum to get bullied or insulted.
              Have a nice day
  • keithmnop77 over 2 years ago
    I'm living with a life-threatening illness that will cause my death, but most probably not for another 5-10 years.

    I live alone and the illness makes it difficult to get outside and socialize on my own. I do get out, usually 2 times a week for lunch.

    The biggest deficiencies are:
    1. Lack of some sort of automated system to check that I'm conscious and able to move each day. Couldn't there be some sort of automated system where we get a daily or twice-daily checkup phone call?

    2. Lack of mental health resources. I'm not a child. I'm not a woman. I'm not aboriginal. I'm not a criminal. And I'm in Manitoba. Unless you are in one of those groups there is no such thing as mental health care in Manitoba. There is nothing in that regard here for middle-aged and elderly law-abiding African, Asian or European males.
    Hide Replies (3)
    • keithmnop77 over 2 years ago
      I will just add. I'm trying to get into a 55+ or assisted living place. I figure that will be less isolating. But not being mobile I'm not making any progress.
      Hide Replies (2)
      • keithmnop77 over 2 years ago
        I will also add that in Manitoba this is not just a rural problem. It is a problem in suburban Winnipeg too.
        Hide reply (1)
        • Hueman over 2 years ago
          Housing, support for care and covering the non-hospital non-physician fees that are covered by provincial health care such as medications, supplies like dressings, and more broad provision of nursing and nursing aid care amongst other needs is critical. We have to stop only covering everything in acute care hospitals and very little in community settings where the cost sand burden of care shifts to families if we wish to lower the use and cost of inappropriate care and optimize quality of end of life supports.
  • YYCdoctor over 2 years ago
    One of my big concerns is lack of consistent, homecare or personal care aides These are the people who can visit you at home to help get you up or to bed or to the washroom or fix you snack or be company. They can make the difference between staying home and having to move to a facility. We need to be able to organize this care more flexibly with ability to step up and down in an urgent manner (24 hour roving team availability when someone has an event which rapidly changes there mobility or function eg falls and family member can’t get them up without the desire or likely benefit from hospitalization. We need to reward and empower these aides who are often poorly paid, turnover rapidly and aren’t readily able to communicate and advocate when they see a change in the clients condition.
    Hide reply (1)
    • YYCdoctor over 2 years ago
      I also want to see compassionate communities where volunteers and Paid caregivers work with the person and those close to them (like family) to achieve the most meaningful support for that person/family
  • halihealth01 over 2 years ago
    As a health care provider, I continually struggle with inadequate nursing services to support palliative care in the home. Very few nurses have a comfort level with this and despite years of shortages, there is no mechanism nor funding to mentor nurses who are potentially interested.
    NOT addressing this need is what brings patients from home to hospital to die.
  • Calamitykid over 2 years ago
    Control over as much as possible for as long as possible - including what is talked about or heard.
  • 21st Century Palliative Care doc over 2 years ago
    It is very important to be able to assess the effect of health care interventions, and the best data is that derived from patients and their caregivers directly, at the point of care. At present there is no national data-gathering, storage or analysis system for palliative care. Without this it will be very difficult to plan services to be as effective as possible, nor to assess theocrats-effectiveness. This should be a high priority in future funding considerations. We need to count what matters in order to make it better.
    Hide reply (1)
    • YYCdoctor over 2 years ago
      I completely agree. We urgently need to fund such a national data system. It will drive the service improvements that patients and those close to them and care providers so desperately need.
  • caelk over 2 years ago
    In my experience the need for professional Spiritual Care Services is crucial at end of life both for the person living with a life-threatening illness and their family or caregiver.
    These needs are being met in some places but we need more and we need consistency. Urgent!
    Hide Replies (2)
    • keithmnop77 over 2 years ago
      I'll just add to that, it is not only the religious who fear death. Those of use who are non-believers, atheists and agnostics, we also need emotional support as death approaches.
    • caelk over 2 years ago
      I am referring to Spiritual Care, not religious care.
  • 40funthings over 2 years ago
    We have found that the nurses doctors and cunuck place children's hospice have been amazing. Our six year old has been palliative for the past two years. We have received many supports. We are at home living everyday to the fullest. We would suggest that there be support groups for teens dealing with the death of a sibling. They are the kids that get put on the back burner because of a medical crisis. They are the ones who struggle at school loose out on oppratunities and live in the shadows of a sibling with a palliative diaganoses and never complain.
  • mickeymouse over 2 years ago
    we need a new paradigm that allows HCP meet the patient where they are at and support them at home or in hospice.. and not in hospitals (unless so desired to be there by the patient). At the end of the day.. its about how the government chooses to pay HCP. Pay more to adjust for the extra time of doing home visits and being on call for home visit emergencies and more HCP would provide that type of wanted care.
  • kinkora1 over 2 years ago
    a place to be cared for with compassion and respect, where family friends can come and go. Medication or treatment so pain is managed.
  • Karaj over 2 years ago
    pain management and companions
  • MaryS over 2 years ago
    Someone being available for an assessment of psycho-social-spiritual coping. A professional, who will journey with patients from a patient-centered approach, with empathetic listening, relationship building, and honouring the person. Emotion-focussed therapy, existential, narrative and grief counselling are all aspects of my work in palliative care. While identifying strengths and resilience, exploring issues of faith and belief, and discussing spirituality, religion and cultural values.
  • palliumcanada over 2 years ago
    For Pallium Canada, it is important that palliative care takes a holistic approach to care; considering the physical, psychological, spiritual, and social aspects of wellness to improve or maintain quality of life. In our experience, this palliative care approach is best provided by an interprofessional team and is central to our vision that every Canadian who requires palliative care will receive it early, effectively and compassionately. This is why Pallium has worked to engage all health care providers who provide generalist- or primary-level palliative care across all care settings, including paramedics, pharmacists, social workers, nurses, physicians across many specialty areas (including family physicians, oncologists, internists, cardiologists, amongst others), and other health care professionals caring for patients with serious illnesses. This approach has been tightly integrated into all our products and LEAP courses and helps health teams to improve communication and collaboration, which can reduce the risk of patients falling through the cracks and not receiving the care they need.
    Furthermore, to support an integrated palliative care approach, caregivers and community members need to be included in the continuum of care. The addition of community members helps to create a wrap-around effect to better support the patient and family dealing with a diagnosis pertaining to a life-limiting and/or life-threatening illness. To guide its efforts in mobilizing communities around palliative care as a public health issue, Pallium Canada has adopted the Compassionate Communities theory of practice. Pallium supports the creation of additional compassionate communities as these groups will ultimately act as local change agents that will directly influence key areas for social change. In addition, Pallium will encourage collaboration, knowledge transfer and learning of best practices, to help Compassionate Communities grow stronger. To assist in this regard, Pallium will provide a number of tools and resources, including evaluation tools to measure impact.
  • Grandma K over 2 years ago
    I am a volunteer palliative care provider. Most important needs at end of life, comfort, company and access to someone to answer questions and deal with issues on a 24 hour basis.
  • soimportant over 2 years ago
    The needs of the person who is experiencing end of life need to be accommodated whether at home or in an institution, particularly in smaller and rural communities
  • ltwaj over 2 years ago
    all about choice. Living in rural setting it is difficult to respect choice because the resources are not there. Not everyone wants to die at home and not all caregivers can step up to provide the care that is needed. Yet, hospitals don't want these patients and they are far to quick to discharge and send home to an environment that is not able to handle the complex needs of the dying patient. If the client is at home the services are not tailored to the patient.
  • HHLH over 2 years ago
    I think it is most important for patients and families to be able to reach out for help if they believe they're suffering. Choice is key -- it's the availability of programs, rather than immediate or direct uptake of programs (the uptake might come later), that's important for patients and families, I believe.
    Hide reply (1)
    • HHLH over 2 years ago
      In a mental health and counselling context, I try to meet these needs by offering choice on whether to access services and offering a safe space in which to explore perceptions, feelings, and self determination when someone seeks counselling.
  • DrDarkwingD over 2 years ago
    Families and patients need 24/7 support. Even if that just means a phone number to call a health professional who knows them. Also we should have the option to have 24 hour nursing in the home for up to a week. I have had more patients die comfortably in their homes in the 2 months I have given out my cell phone number than in the previous 4 years I've been doing palliative care for patients who could only call a home care nurse when they wanted to reach me.
  • Billy Jean over 2 years ago
    As a health care provider, the most important thing for families managing a dying person in the home is having someone they can contact in case of an emergency. In the rural setting, that is unfortunately not always possible as currently their is no funding available to have nurses take call. We try to work around that by using some flexibility with our time but it is not optimal.
  • HOME over 2 years ago
    Need caring Health Care Providers, that your loved one be treated with a positive environment and made to feel they are still important to the people who care for them. Give them the emotional and medical support. The Federal Government should make it that all medications / help be uniform throughout each province for palliative care. That medications acceptable to some provinces and not accepted in others is not acceptable. The people should have equal access to whatever medications available. Also, the Government should research what medications, care, etc....are offered in other countries, and see what we can do to get these to our people in need. Let's move ahead in this field.
  • smilewray over 2 years ago
    Health care providers need to respect wishes of the patient
    Especially when specifically states do not incubate!
    Was not the case with my Mom
    She was very upset when the nurse incubated her and emotional her end of life experience was not pleasant because of that
    Hide reply (1)
    • FreedomDi over 2 years ago
      Good morning Smilewray,

      I"m so sorry you had to go through that experience with your mother. My Mom had the same request, no intubation and no extra-ordinary measures to keep her alive. She wanted to die with dignity, without pain in her own home surrounded by family and friends.

      Do take care

  • dtfalcon over 2 years ago
    Pain management and acceptance by the family/loved ones that your loved one is ready to die.
  • palcare over 2 years ago
    Trained health providers to provide 24 hour support is one of the most important at end of life and timely access to medications to treat symptoms.
    In our community we offer 24 Registered Nurse on call access to end of life persons, physicians vary on their availability and aides in our community are limited based on schedules. Access to medications is a concern at this time due to working in a rural community where pharmacy's do not carry the medications we need at all times. Policies and procedures in our health facility prevent us from having a "emergency drug" kit available to us for unexpected symptoms. EMS assess, tx, refer program can fill the gap in some cases but not all. Again due to being Rural they can be limited in how long they can stay with an end of life person until medications can be ordered in through a pharmacy.
  • drvho over 2 years ago
    Help identify and understand what are the important goals of the person as they enter the end of life, like things to do, people to see, events to attend, places to go. Whatever needs to be met to support those goals are the most important, which usually requires pain and symptom management so that the person is not defined by their illness.
  • Jane over 2 years ago
    I think as someone who recently provided care to her father who was dying from cancer, that a palliative individual needs to feel that he or she can die in the home setting and not have to be moved to an institution.
    Hide reply (1)
    • FreedomDi over 2 years ago
      Good day Jane,

      I completely agree with your statement. I have assisted both my 50 year old brother and my 73 year old mother to die at home as per their wish. I was fortunate to have support and a great team, e.g. Extra Mural professional Team to assist me, otherwise, I would have not been able to respect their wishes to die in dignity, in their home as per their wish.

      Do take care
  • Delta Starr over 2 years ago
    Most important is dignity and respecting individuals wishes. As a professional that would be doing all I can to respect and carry out the persons wishes.
  • Brad Inkster over 2 years ago
    We need to ensure care and comfort to the person with the illness, and psychosocial support to the grieving family members and that doesn't seem to be available in our health care system. People are forced to go outside the system and their needs are not always met.
  • Community Hospice Champion over 2 years ago
    In our experience what is needed is:
    1) Well informed, knowledgeable in home psychosocial support inclusive of unit (palliative, spouse, family, team)
    2) Collaborative connected care teams
    We have model which provides in home and phone support using staff and volunteers. We provide support to over 1000 palliative individuals per year + their families. Our hospice services are offered in peoples homes (hospice counselling, engagement (caregiver), day hospice, volunteer support (respite, companioning, legacy, comp therapy), spiritual care, children's program (one to one, education, group), wellness activities and bereavement.
  • Maureen over 2 years ago
    Training for GP’s and RN’s in acute care
    Access to Palliative Physcian expertise
    Access to Hospice beds when a Home death is not an option
    More hospice beds and Palliative physcians across Saskatchewan
  • rae over 2 years ago
    As a health care provider, it is important to ensure care is person-centered. The person/family receiving care need to feel as though they have the option to be a part of the decision making and a part of developing the care plan. Having control over what is happening is important. Open and ongoing communication are important for understanding what people and their families want. Educating health care providers to provide quality end of life care in all settings is essential to improving the quality of care available in BC. Health care providers in residential care settings, especially affiliates, need more support and education than currently available.
  • CarePartner over 2 years ago
    I have a personal story and I am also a health care provider (RN) My husband was dying of leukemia and we had just started home care (CCAC) when he was scheduled for a blood transfusion in a hospital 40 minutes away. The transfusion would not make any difference to his prognosis but he knew he felt stronger after having them , from previous experience. His best friend was coming in 3 days to see him from 6 hours away and there was a chance he would die before he could see him so he wanted the transfusion. The palliative doctor, myself and the nurse all felt he was too weak but he wanted it and they helped us form a plan to transport him, DNR in my purse, medications in case he had a seizure en route and advice about what to do if he died on the way (come home and call the nurse). My family practised moving him by lifting a family member on a chair and taking it down the stairs and into the car. Then the real thing- He received his transfusion and the staff treated him so well knowing it was the last time they would see him alive. He came home stronger and lived 7 days, in time to say goodbye to friends and family. This is client- centered care.
  • Jashmeister over 2 years ago
    I am a health care provider but I am replying as I supported my parents as my mother became palliative. She initially wanted to stay at home but my father was not able to cope. The CCAC nursing support was completely inadequate for people unfamiliar with dying & what to expect. My mother was uncomfortable & my father was panicked. After discussing our options, we chose to move my mother to hospice care. This experience was soooo much better - she was kept comfortable, knowledgeable caring people were close by to answer any questions & we were all able to
    Stay with her until the end. The quality & amount of care was so superior to what she received from CCAC in home - the CCAC model did not offer enough staff hours or consistency of personnel for a man faced with the death of his life partner, not familiar or accustomed to caregiving.
    Hide reply (1)
    • CarePartner over 2 years ago
      I work for a palliative care agency in the home and do work with the CCAC. I have heard and seen this problem of inadequate staffing and consistency in the CCAC but I have also seen really good care provided by the CCAC. It is related to the difficulties of accessing staff in a timely way and being able to put people in who have experience and who are not already working somewhere else. So it is easy to say hospice is much better and if you look at why, some of the answer is that staff who work at hospice are scheduled on a long month by month schedule and there will always be people available as they hire based on the # of beds in their hospice. CCAC however, relies on various nursing agencies and each agency is booking their staff ahead if possible and when they have a request to fill a new client's needs, they may have a limited (or no) staff available immediately and depending on the rest of their caseload, have to shift people around. If you are good at your job, you will probably be booked solid so often these agencies place people who may not be as experienced as others. Remember, they are getting paid much less that hospital staff and often are juggling 2 or 3 different cases. I am mentioning this not as an excuse for poor care but to help move the discussion to solutions.
  • scrappy over 2 years ago
    I was a health care provider for alot of years and retired to look after my mother. She was frail and one morning I went in to see about helping her get up and she had had a massive stroke. This was a Sunday and of course no Dr available but her wishes were to stay at home and she had a DNR, so on Monday morning I got in touch with her family dr and she immediately started end of life treatment and a Extra Mural nurse came that morning and we worked together for the next 3 days looking after my mother , with the help of some caregivers and my husband. The extra mural nurses were wonderful to my family as well as to Mom. We had everything to work with at home , bed, medications etc. and I was so appreciative of extra mural
  • JDAVID over 2 years ago
    Pain and symptom management needs to be well controlled to allow for the most important thing which is education and support. What is normal, what to expect ahead and how you can be supported to adapt and manage those changes both for the person and their family.
  • fernandlily over 2 years ago
    Symptom management and psychosocial supports are of the utmost importance. There need to be more healthcare staff with the time and training to respond appropriately to end of life issues and grief. As a health care provider in Palliative Care, I am blessed to work with a team that prioritizes these things but as a family member I've witnessed rushed care that does not treat the person holistically on other units.
  • Tilly over 2 years ago
    The most important thing is no pain and follow the wishes what has been discussed that everyone follow up on it.
  • Tilly over 2 years ago
    We have everything in place and I hope and will see to it that those wishes are met. I must say we have great home care for now and I am very thankful for that.
  • Mary 64 over 2 years ago
    Being able to continue through the journey with a level of pain control that allows me to interact with my loved ones, maintain some cognition and control over my life. For the care giver to be able to provide the comfort measures to meet my loved ones needs. Having access to appropriate pain medication , massage therapies, and respite care for the care provider to recharge. Emotional and psychological counseling is essential for everyone
  • Marvel over 2 years ago
    support to remain at home with access to personal support workers day and night to help the family get some sleep and relief
    visits from by family doctor
    management of symptoms
    emotional/spiritual support for patient and family
    access to functioning equipment in a timely fashion
    regular visits from a nurse or other professional as needed
    need to negotiate for conversations and use of non-profit trained volunteers
  • whiteskye over 2 years ago
    physical and emotional support to move through the journey. (ie a palliative care space and counselling/spiritual support for all involved)
  • Letstalk2018 over 2 years ago
    The most important thing is comfort, safety, and access to good care.
  • PalliativeEvangelist over 2 years ago
    From caregivers perspective:
    1. The right questions, asked in plain language:
    -what are your: hopes, worries, fears (vs goals, values, beliefs)
    - what do you hope healthcare professionals can do
    2. Feeling purposeful - being able to contribute/help in some small way
    3. Feeling valued - ensure simple pleasures are in place
  • royden over 2 years ago
    compassion, acceptance of diversity re culture, race,gender and belief system. To be heard. Competent comprehensive physical emotional and mental health care for patient and family reflective of needs.Privacy, confidentiality
  • chatterbox over 2 years ago
    Minimal pain, surrounded by people who love you and give you what you want, where you want it.
  • 2012july over 2 years ago
    I do not have a life-threatening illness, nor am I a caretaker or a healthcare provider. I think the most important needs at end of life are being treated like a valuable human being, having a say in what happens to me, good physical care including pain management.
  • candysurvey over 2 years ago
    It is important to see the individual as a whole person, not just the disease. The whole person includes their family, caregivers, friends; whoever they deem important. We need to attend to not only the physical symptoms but also the emotional components of this as well. We need a multi-prong approach, not only the formal medical system but as a community we need to do a better job of taking care of each other. We need to do a better job of helping individuals understand the complexities of a life limiting illness. We need to look at all options of care. We are so entrenched in the "heal at all costs" mentality. We need to be thinking "just because we can, doesn't mean we should." What is important to the individual? How we help them achieve their vision for their palliative care.
  • jcruikshank over 2 years ago
    Person-centered care is an essential part of all heathcare delivery, including and especially palliative care. Delivering care
    that is culturally appropriate and sensitive to the social, spiritual, and psychological needs of patients at the end of life is
    essential for all Canadians to access a ‘good death’.
    Barriers include lack of support and information for caregivers, particularly financial support for family caregivers who
    may be responsible for a loved one whose illness and care are impacting their income. Cultural and emotional literacy are
    also extremely important for caregivers, and access to information, tools, and educational supports can reduce feelings of
    isolation for both caregivers and patients and improve the quality of the care provided.
  • Kacy over 2 years ago
    The need to be seen as a whole person of value is the most important need in my view. Approaching each client and family with authenticity and curiosity helps me to address this and to uncover each person’s unique needs. Asking them about their needs, wants and preferences is respectful, reinforces the therapeutic relationship, demonstrates caring, and recognizes the inherent value, dignity and autonomy of the person. Empathetic listening facilitates opportunities to discuss goals of care, advance care planning, manage symptoms, identify knowledge deficiencies and provide support for psychosocial issues.
  • Etieman over 2 years ago
    I am not a health care provider but I feel compassion and care are the most important . I think it is very important that they are made comfortable and are able to live with dignity until they expire without medical induced death.
  • Tica24 over 2 years ago
    Pain free and comfortable care. Family and friend visits.
  • Diane over 2 years ago
    Poorly. Most doctors do not know about palliative care resources. Those families who wish palliative care cannot access care because it is not available-not enough beds especially in cities.
    Some nursing homes have a few beds but families are disgusted with smells, lack of privacy & inaccessibility to their pets

    Few families know about home palliative care.

    At least one doctor is teaching in U of T about palliative care.
  • respondent over 2 years ago
    At end of life most important to have loved ones with you and knowing/hoping that you are not putting undue hardship on them.
    As a caregiver, it is most important to have the resources you need which include time to properly care for loved ones and the support system to back you up.
    The government is doing better with the time aspect with the leaves that have been introduced/extended in Ontario. Resources can be harder to find when you do not necessarily know where to look and have not been in this kind of a situation before.
  • sunshinecaregiver over 2 years ago
    Being informed, prepared, and supported. Once those things are in place it is easier to ask for what you need (or on behalf of someone else) and to know what is available in the first place. From there, people can make informed decisions about how they want their remaining time to be spent.
  • eegr18 over 2 years ago
    communication , communication, communication .....open , honest, covering as much aor as little information as the person who is dying wants or needs ...clear, informative, supportive, so that good decisions, and plans can be realized
  • eegr18 over 2 years ago
    the important of readily available supports cannot be underestimated ....so right away we have to consider rural , remote and remote North communities where access to a full range of PC service, expertise and supports can be spotty at best.
    support for family, loved ones, and the individual ...along all areas...spiritual, physical, emotional, financial, social etc and real choice...if i person wishes to die at home but service are inadequate that is not a real choice for them
  • ruggma over 2 years ago
    to be srrounded by people, family or friends who can enable you to be in the place that brings the most comfort
    trying to access affordable , local professional care so that family and friends can be family and friends
  • FJET over 2 years ago
    In addition to physical care, it is essential that family caregivers are included as part of the care team. Easy access to paliative care is essential.
  • 123AbC over 2 years ago
    The most important needs at EOL are whatever the person says they are. HCP should be following the person's wishes, beliefs and values. Listen to your person.... have conversations.... ask them!!
  • NK over 2 years ago
    Dignity and respect for the wishes of the patient.
    Time and support for the caregiver and persons close to the patient
  • Tsawwassen over 2 years ago
    Physical comfort.
  • Richmond patient over 2 years ago
    If I am very ill, I hope my last wishes will be respected. The care provider are professionals, they should provide the best care to the patient.
  • JenniferM over 2 years ago
    A person needs to be seen heard and validated. Just listening to what their fears, wishes and regrets are you can provide support to the person and their caregiver as well.
  • alliedhealthworker over 2 years ago
    I'm a healthcare provider. For me, the most rewarding moments I've shared with individuals with life-limiting illnesses were in the moments where I felt that I was able to make them truly feel safe to share their hopes/fears/values/wishes. Actively listening is crucial - listening to understand, not listening to jump in with a response. In the context of an interprofessional team, that also means communicating the individual's expressed wishes/hopes/values/fears with other members of the care team and also listening attentively regardless of whether questions or concerns pertain to my specific role (i.e., not passing the buck and avoiding the "that's not my job" attitude). Forming a collaborative relationship with the whole team and helping the individual know that they are central to the team, not external to it.
  • Visionary2018 over 2 years ago
    The health care team which surrounded our father and family at home for his end of life care was the most important factor at the end of his life. Having consistent nurse visits, the same visiting nurses who knew our father and family, educating us as family in how to administer pain medication, and having an on call nurse number supported us so our father could have his wish of dying at home. Having one nursing care coordinator whom we could contact for concerns made this very painful journey more manageable. As supportive as the team was, there were times when nurses were not available or short-staffed and we had to rely on family to provide our father his care. Our family was at the mercy of waiting until the nurse arrived and then we could leave the house and attend to our our personal matters and employment. I think Canada needs to look at other options and models of care such as self-directed funding. With aging baby boomers, the decline in home care providers, increase palliative needs from chronic diseases, there are not going to be enough funds nor providers to continue the same model of Home Care in the way it is currently being provided. Mobile NP directed community teams could be another answer to providing palliative pain and symptom management in the community.
  • valeighgirl over 2 years ago
    Listening to my patients about what is most important to them at EoL and helping to achieve their goals and meet their needs as much as feasible during the remainder of their life. The needs of maintaining as much control and independence as possible, the need for support from and FOR their family members to reduce stress, the need to be heard and acknowledged- these are all things that I see regularly in my patients at EoL
    Hide Replies (2)
    • Gladbutterfly over 2 years ago
      I agree. I’m 71 and am dealing with periodic severe pain that immobilizes me some days. I don’t want to give up living independently, especially because I have bipolar disorder and need to be able to control the amount of time around other people. Basically, I’m an Anchorite or a hermit and only want to stay in my home and die here when the time arrives.
      Hide reply (1)
      • Layla2018 over 2 years ago
        I totally agree. I'm the same age as you and suffer many handicaps. I don't want to go to a nursing home or hospital to die. I have signed a DNR order that my doctor has. My family is aware of my wishes. I have been at death's door twice now and I have no fear of dying.
  • Layla2018 over 2 years ago
    At my end of life I want to be sufficiently medicated so as not to suffer . If I am in extreme pain then dose me to the max. If it is my time to go do not try to revive me, let me go in peace please. I have just gone through this with a very dear friend who suffered for 2 weeks in palliative care. Her medical staff, doctors and nurses were excellent. It was hard to be with her during her last week as she was not communicative and could not respond in any way.
  • Hummingbird over 2 years ago
    In my experience the most important needs and end of life are those of the person experiencing end of life. These needs may not be what we has care providers think. For example one client wanted help to witness papers that would ensure her home went to her brother. It took a half hour for her to sign those papers. The nurse providing care that day put aside her agenda and focused on the client's needs. Maybe there were other tasks that required attention but this was what the client needed that day.
  • bluejay over 2 years ago
    In the City of Kawartha Lakes we have a compassionate but efficient team of health care workers, volunteers and other social service providers who work to ensure that those near the end of life have as much autonomy as is possible, as pain free as possible and in their own home if possible. It is an extraordinary, positive environment full of heart warming stories and caring individuals.
  • momforlife over 2 years ago
    I feel that family able to access patient, caring medical team, comfort for the patient are the most important - there are only a few of these places around. They should be everywhere that patients need this kind of help.
  • cam over 2 years ago
    Listening is key and communication with the family and caregivers are key. Making sure that goals of care are met is essential. Referral to a palliative care team (hospice society) for the patient and family is required to enhance the quality of life for the patient and caregiver.