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Discussion 4.1: Special Populations – Increasing Awareness

over 1 year ago
CLOSED: This discussion has concluded.

Palliative care should be accessible to all, regardless of health, social or socioeconomic status. However, our Canadian care delivery model was developed with certain assumptions about the people receiving care; assumptions such as the care recipient has stable and secure housing, an informal support network (family and friends), a relatively predictable disease trajectory, the mobility to access their health care teams, the ability to communicate without language barriers to their health care provider team such things as pain, values, hopes and wishes. These are just some of the barriers facing special populations in Canada, and the list only gets at a small number of the issues they face.

Many vulnerable or underserviced populations don’t get referred to palliative care, or do not get referred early enough that it can make a difference while they are alive.

How can we raise awareness about palliative care for these populations in general so that families themselves can advocate for access?

This consultation is now closed. 


  • tmiller about 2 years ago
    There needs to be increasing awareness of palliative care for children and improving access to much needed services. As a family cares for their child living with a life threatening illness, of which the life expectancy is know to be shortened, there are huge increasing caregiver needs as parents take care of these children over years as the child becomes increasingly dependant with higher care needs.
    To raise awareness, health care providers need support /education to help parents in the transition to pediatric palliative care. The drs. and nurses who have been with the parents family over the years (this is the pediatricians connected with tertiary hospitals who are the primary health care provider with the parents) and are the ones he parents trust, and the ones that have worked for many years with the parents , fighting for the life of their child. Parents will naturally continue to fight for the life of their child for as long as possible so families naturally won't advocate for access to palliative/hospice services so the education, in regards to palliative care for children has to be with the health care providers that the families trust, who can introduce and support this transition to palliative care.
  • MooseDragon over 2 years ago
    Awareness campaign: commercials, web advertisements. Website with FAQ What is palliative care? How can palliative care help? What palliative care support/services should you expect are available/accessible from the system?

    Information about access: Palliative care specific websites with easily accessible and mapped lists of available resources, contact information, hotline with navigators to help connect to appropriate services.
    Hide Replies (2)
    • ICareBC over 2 years ago
      Tell people about existing resources. I was referred to Canadian Virtual Hospice which is an amazing and helpful web site.
    • CanadianVirtualHospice about 2 years ago
      Hi there, our "What is Palliative Care?" topics article addresses the questions you've asked above. We have a books, links and more section on our website with recommended resources, all of which have been reviewed by members of our clinical team. We also have a listing of national and provincial programs and services of palliative care associations, home care programs, regional and local palliative care programs and services, residential hospices, bereavements services and more. Last year, we had 1.6+ million visitors to the http://virtualhospice.ca website. We are hoping to provide more and more Canadians with information and support on advanced illness, palliative care, loss and grief.
  • JusticeinDying about 2 years ago
    Improving our death literacy throughout Canadian society is of great and ‘grave’ concern.
    The phobia that permeates regarding all things dying related is challenging us within community, and families.

    The social justice lens for dying is absolutely necessary. Our assumptions and biases must be explored to ensure that we consider ... in a country as resourced as Canada is- why are we not able to provide exceptional dying for more of our citizens?
  • SLD about 2 years ago
    We have a local palliative care residence that advertises broadly, yet, often people are not aware of the service. I think it is because the subject of death is seen as so negative and not talked about enough until faced. We prepare for so much in our lives, but rarely for the inevitable. However, physicians in my opinion should be the first to introduce early on in a terminal prognosis the availability of palliative care, because they know the timing of the disease best. As a volunteer, I have seen people enter who were unconscious and only lasted a day. I can't help but think that they would have enjoyed their last days, weeks or few months in comfort and security of a palliative care environment more if admitted earlier.
  • joyisnow about 2 years ago
    I think our health system needs to support more palliative care even in rural communities. It should be the "first response" when medical how-to cannot fix the problem. Good Palliative care gives the individual time and respect and allows the family to share the precious life of their loved one, without unhelpful medical interventions.
  • Blackman about 2 years ago
    By differentiating between palliative care and hospice end of life care and by supporting every person entering palliative care to live as quality of life as possible. Dying is part of living and we need as a Canadian society to emphasize to the person in palliative and their family that they are not a burden, that their peace and comfort matters a great deal to us, and to allow life to play itself all the way out. Embracing and assuring them of their dignity and value.
    Hide reply (1)
    • Tia about 2 years ago
      absolutely agreed
  • joyisnow about 2 years ago
    We seem to be a society attached to saving life, which is good; but good palliative care is the natural partner to good medical care. We are mortal, and our societal "fear of death" has prevented us from developing good palliative care. MAiD may be another new deterrent to good palliative care.
    Hide reply (1)
    • Tia about 2 years ago
      Agreed, MAiD can rob us of the processes we need as people, to come to terms with our mortality. It can rob us of the maturing processes needed to become whole. We as a society talk a lot about facing our fears, dealing with our obstacles- why then are we so attracted to the idea of cutting short a very crucial time of growth in our lives and perhaps even more so in the growth and maturity of those around us? Can it be that few of us have learned to embrace pain as a part of life, few of us have learned to suffer well in this culture full of distractions?
  • Busy1972 about 2 years ago
    I find that often doctors are not aware of the services available to families. When my father in law was very ill with a terminal disease my mother in law was not aware she could get help with his care. I had informed the hospital of their situation and they set them up with assistance. If I had not been working in the field of nursing they would not have had the care set up that was needed. When patients are being discharged from the hospital I don’t think that the staff always ask the right questions to ensure proper support is available to the families. As a long term care provider I see it often in the emergency admissions my facility receives. When someone is given a diagnosis of a terminal illness the family should be set up with LIHN right away before the services are needed so that the family is feeling supported from the very beginning of the struggle. We need to do it before it becomes overwhelming to the care providers for the ill individual.
  • @truedignity about 2 years ago
    Our society is getting more fast-paced, and the average household is getting smaller. I was not able to have children as I have endometriosis and adenomyosis, and had a hysterectomy. Regardless of how individuals or couples are childless or lacking a family - or even if you only have one or two children - it is more than a burden to care for the ill - the toll on the care-giver is significant and can rob younger people of their health, productivity and quality of life. I consider people without children or family - a special population, because you are essentially alone. As someone who anticipates I will be alone when I am older, I want the option to die with dignity. I don't want to die without anyone looking out for me, so I am vulnerable to mistreatment as a vulnerable terminally-ill older adult. I don't want to die without sound mind and be deemed unable to request end of life options. I want to have what citizens in the Netherlands have - which is a dignified, intelligent, compassionate, humane and spiritual and enlightened way of treating fellow human beings - a true choice to have quality of life and the ability to choose end of life options. Greater outreach is needed to people who are alone later in life, and what the implications will be for their last years/months/days and dying alone or vulnerable to mistreatment/abuse of the vulnerable when they are elderly and alone.
    Hide reply (1)
    • Compassion about 2 years ago
      This is where 'compassionate communities' come in. We all live in neighbourhoods. Even most of the homeless develop a type of neighbourhood. Today, let us look around our own neighbourhoods and ensure that 'no one' feels 'alone' or would be at risk of 'dying alone'. In my neighbourhood, we look out for each other and support each other. I hope someone in your neighbourhood will do the same for you. In a compassionate community, no one should feel they need to choose to have their life ended prematurely because there is no one to care for and support them or because of the fear that their pain and suffering will not be adequately controlled. There may be other reasons that this is the option selected but please let it not be because of lack of palliative care and community compassion! Please let Canada demonstrate by the quality of their palliative care programs in all urban and rural areas and for all populations that there is an all encompassing holistic and team approach of compassionate care, which includes trained compassionate volunteers. But also, let Canada's neighbourhoods show this same compassionate care for those that are alone and may supportive caring networks be built around each person living with a life limiting illness.
  • bjpalliative about 2 years ago
    Tough question! Calgary has implemented a mobile palliative program for the homeless (CAMPP, Calgary Allied Mobile Palliative Program). It's an inspiration to everyone. Mobility increases access, period. By "going to them", offering a caring hand, listening to their very special needs, just makes things better. There should be travelling vans, or trailers, all over the country, to manage the under served and vulnerable populations. This takes real courage and a willingness to collaborate with others, and I commend the nurses and doctors who participate this way. There is hope!
  • hospice about 2 years ago
    The CHPCA is committed to identifying the unique needs of immigrants and refugees; rural, remote and indigenous
    communities; children, adolescents and young adults; LGBTQ2S communities and others, and to advocating for their
    identification and consideration at the government level. Both caregivers and patients may be members of special
    populations and it is essential that they be able to access resources and care that are appropriate to their needs in order
    to be fully served by the healthcare system. We are committed to working with pediatric care-providers and volunteers to
    ensure the needs of all hospice palliative care patients are better served.
    CHPCA has set an expectation for healthcare providers to assess caregiver quality of life as part of routine practice, as well
    as emphasizing the importance of training and support for palliative care volunteers across all settings and the establishment
    of just-in-time learning. CHPCA has also committed to advocate for the support of indigenous communities to receive
    palliative care where and how they wish to receive it while providing the required resources, while identifying and removing
    jurisdictional/bureaucratic barriers to care at all government and band levels. Digital health resources can also increase access
    to palliative resources for individuals in geographically isolated communities.
  • hospice about 2 years ago
    Awareness of HPC is needed with all populations including those special populations referenced above. All Canadians that don't receive or can't get the approapriate services are vulnerable and underserved. We must do better to reach all that need services and pay special attention to those marginalized by society. We must do better in helping Indigenous Canadians provide services for themselves and their communities. Some of these services are just not offered which leaves them vulnerable. These services need to be funded, better training and education offered and better awareness of what HPC is. CHPCA has a great resource for training of community health care workers in First Nations communities but it isn't used widely. More supports are needed in this area.
  • Maryisarat about 2 years ago
    Perhaps finding the natural "caregivers" in small and/or remote communities and providing them training to provide palliative care and explain to the loved ones what this is.
  • HPCReady about 2 years ago
    While I think it’s great for persons to be empowered to self-advocate and use their voices, but can we not create change without requiring exhausting effort on the part of those who are vulnerable in addition to experiencing a life-limiting illness/bereavement? It seems wildly disrespectful that we won’t make changes to accommodated them into the healthcare system before we analyse them in their grief and strategize how to help them most efficiently. Man, we should be better than this. We know the building blocks for health, but we sure aren’t focusing on them.
    The Model to Guide Palliative Care has been around long enough, that leaders should stop reinventing the wheel by writing another paper or devising another strategy - spending more time and money, and just get started on the hard work of implementing real change.
  • Support4u about 2 years ago
    Nearly everyone with an illness goes to a drug store. There are no flyers or pamphlets there about Palliative Care or support services. No wonder immigrants and other special populations are unaware of services available to them. Put information in the pharmacies. Please.
  • hfbkn about 2 years ago
    Make such education on palliative care as public as possible: flyers in family doctors' offices, mailed information pamphlets, part of the regular news report channels for a set period of time, online awareness campaigns (including through social media outlets), and even a public information hotline.
  • LovelyKatieLumps about 2 years ago
    There needs to be clarity surrounding definitions of terms like ‘palliative’ and ‘hospice’. I was referred to ‘Pain Management’ and when the attending physician walked in, she said ‘Welcome to Palliative.’ I thought that meant I had hours to live or that my oncologist was keeping something from me about my diagnosis because I had watched my grandparents die in palliative care. I didn’t realize that it actually meant that my needs were going to be met in an environment that was putting more than my cancer first. I’ve heard story after story about families not wanting their loved one to go to palliative care because of the assumption that it means the patient has hours to live. Sometimes that is the case, but sometimes it means the patient will get the best of care and have a greater quality of life.

    Outside of my one on one visits with my palliative doctor, as a young adult with terminal cancer, I often don’t feel like there is a place for me in the palliative setting. Although many patients in palliative care are seniors, there are those of us who are not. Many of the national websites, hospital information pamphlets, groups and programs are covered with pictures of people two or three times my age. Where am I represented? When someone isn't represented she often doesn't feel that she necessarily has access to that care. Awareness would be raised with a more inclusive approach to palliative care that reached all ages, not just those who are geriatric.
  • genhlisk about 2 years ago
    One of the greatest problems is the unwillingness/ lack of attention to these issues exhibited by our political parties. Prior to the last Ontario election, I called each of the party’s headquarters office and asked them specific questions on what they had planned on addressing the many and varied needs of long-term care housing, staffing, training and control. Only one party (the outgoing) had anything tangible to offer and were extremely proud of themselves to quote. “Significant” amount they were planning to spend. When asked however what specifically they planned to spend the money on and why, they were unable to provide any true response. If the amount they were planning to spend was for infrastructure, new buildings to supplement the current lack, what did they plan for staffing these facilities and then training......No response.....

    I find it incredulous that the vast majority of health care professionals are forecasting a huge increase in demand for those requiring long-term care facilities, the media agrees and continually cites over the past 10 or so years, horror stories in existing facilities......yet not one political party is standing up and saying that we have to start now, small though it may be........why? Do they think, damn, it’s too expensive and he’ll we probably won’t be in power anyway when the fertile earth hits the oscillating disc...? I truly hope the individuals involved don’t find themselves in the thick of it as they and their loved ones age...
  • Buffy70 about 2 years ago
    I just saw a piece on the news talking about providing palliative care for the homeless. That is awesome, more compassionate ideas like this are needed for those in the poverty level including the homeless
  • Sherry Moran about 2 years ago
    I simply want all Canadians to have access to both palliative care and medically assisted dying.
  • Janus about 2 years ago
    Special populations can't be reached via traditional outreach approaches, including TV ads and social media, much less through medical practitioners. You must go directly to Correctional Services Canada to address the palliative care needs of inmates and you must educate correctional services unions about the rights of patients.

    You must go directly to all of the Indigenous groups and their health associations, as well as to their networks in urban and remote Northern regions, to ensure they are aware of palliative care options. They won't be hearing this from doctors for the most part as physicians serving them are few and far between.

    For those with mental health issues, and with intellectual challenges, often housed in mental institutions, or, in communities serving those with Down's Syndrome, you can not rely upon providing this information to the institutions who 'warehouse' many of these human beings. You must connect with their patient advocates.

    For impoverished seniors, many of whom are on the receiving end of elder abuse, you must reach far and wide to ensure that you are getting to them. I would empower provincial health officers to enter long-term care facilities subsidized by governments, and hospitals, to speak to seniors directly in information sessions about palliative care options and contacts. This could include room-to-room visits.
  • CCBB_1544 about 2 years ago
    Make sure the discussion happens, amongst medical personnel, in all cases where palliative care may be necessary. The elderly are very vulnerable in these circumstances and often are alone or with little family support, and the family often cannot be there 24/7. Extra care should be provided when someone is dying to ensure they die in comfort.
  • qualicumgirl about 2 years ago
    It belongs to doctors. They need to refer, "early enough". Or clinics. Or wherever it is that the person learns that the condition is terminal. Don't drop the ball there! Build in the structures to ensure that just like you come home with a pregnancy and are followed or a new baby and are followed...when you come home with "you will die of this" you are followed.
    As many advertisements as are put out (in doctors offices, magazines, articles in the newspapers....) to support the health support and prevention, should be the dying support .
  • Shtudney about 2 years ago
    I have considerable doubt that awareness about this is a problem in Canada.
  • Trish about 2 years ago
    Their doctor should have and provide that information
  • Poli about 2 years ago
    Everyone watches TV. Public service announcements, local newspapers, service clubs, information sessions, training of people who live in these regions.
  • alliedhealthworker over 2 years ago
    Collaborate with organizations that already work with these populations - they would have the best sense of the population needs, have credibility with members/families of the populations, etc. Ensure that those providing care in general to special populations also receive palliative care training/education.
    Hide reply (1)
    • Jvangennip about 2 years ago
      Agreed. The barriers that special populations face regarding palliative care are often the barriers they face regarding healthcare in general. If we did a better job making primary healthcare accessible to those experiencing chronic homelessness for example, and those care providers were educated on palliative care, access to palliative care would automatically improve.
  • GD over 2 years ago
    Each province needs a specific set of strategies to address access for vulnerable populations. These strategies need to be supported by appropriate policy and an implementation plan. Implementation will be most effective if it is done on regional/local level.
    Hide Replies (2)
    • Tequilagirl over 2 years ago
      I see this as a National issue not province dependent.
      Hide reply (1)
      • Jvangennip about 2 years ago
        That depends how the care is delivered. If it is through the health care budget, that is provincial. National strategies that fall under healthcare generally consist of suggestions to the provinces, then it is up to the provinces whether to implement them.
  • Caffy about 2 years ago
    Info should be available where people access healthcare. Town hall-like meetings may be helpful in getting the word out, or even education sessions. Home visiting programs by nurses, social workers, physio, OT etc would be very effective. It would be great if physicians were able to provide in-home care as well
  • Jasper about 2 years ago
    I saw a beautiful piece on CBC news the other night about a home being opened up for homeless palliative people - I think in Toronto. This should be done across Canada. All human beings deserve to die with dignity.
  • Taurus about 2 years ago
    I draw your attention to an article on the CBC newsfeed - July 2 or 3, 2018 regarding the Journey Home Hospice - an initiative to provide hospice care for street people - yes, they do suffer from life threatening diseases and are often young.
  • Marnie about 2 years ago
    The assumptions referred to above are more often not the case than they are the case. Hold panel presentations followed by Question and Answer sessions at various places: community centres, seniors centres, care centres, churches, schools, ESL schools, universities, workplaces, ...
  • Richmond patient over 2 years ago
    Brochures should be circulating in doctor's office or in the hospital.
    Hide reply (1)
    • Marnie about 2 years ago
      You need (a lot) more than brochures!
  • Cv12 over 2 years ago
    Compassionate communities a public health and palliative care initiative should support this work. There are several innovative projects in Toronto, Calgary and Edmonton with palliative care staff going to where people are at,even with no set address or in less supported areas.
    Hide reply (1)
    • Marnie about 2 years ago
      I live in Calgary and am unaware of Calgary having any innovative project(s) such as you are referring to above.
  • Jnunn76 about 2 years ago
    How does the Federal Gov't raise awareness about any topic? Advertise. Ensure you have sufficiently trained health care workers in every jurisdiction and provide funding for remote access teams. Then advertise. Also, provide residential hospices with additional funds for longer term stays. The current admission guide lines in my area (Ontario, SE LHIN) is 40% on PPS. Beds with accessibility for higher PPS admissions would assist with vulnerable populations.
  • Vera about 2 years ago
    Palliative Care should be available to all.
  • marox2419 about 2 years ago
    Partner with organizations that have built trust with those populations. Ask community leaders to speak & advocate on behalf of their populations. Palliative care is a choice. Dying with Dignity is a choice. Let's honour the choice.
  • Mairy about 2 years ago
    I think that the way to raise awareness is to partner with the grass-roots organizations that are working in almost all (all?) groups within Canada. The community leaders are the best ones to inform their communities, and to advocate or train others to advocate on their behalf. We need to cut the bureaucracy and empower people to act. I agree with the comments to reduce the role of the medical establishment. Rely more on nurse practitioners, social workers, community workers. And always, always provide information on MAiD.
  • VictoriaBCJB over 2 years ago
    I was a long time (8yrs) palliative care volunteer. Did pet therapy. First in MTL then recently in Victoria. I've seen different environments.

    What "gets" me is how palliative care has just disappeared from the public forum. Seems that everything to do with medically assisted dying is in the news very day. There was a meeting here in Victoria yesterday Two years with MAiD: An update. Where is palliative care? They were slow and after two years are not "there". They seem to view palliative care on its own, nothing has changed and MAiD is not discussed. MAiD is a patient's right, part of the continuum of care.

    Yes the general public is still stuck in the 1980s when it comes to palliative care. I have always felt palliative care should be introduced to the patient much earlier in their journey. For example whey they are diagnosed with stage IV cancer. Their care team should include oncology BUT also pc. They need someone, a team whose only concern is their comfort and symptom management. How come we aren't there? It's 2018.
    Hide Replies (6)
    • NurseDar over 2 years ago
      I agree. Educating the general public and medical community needs to be out there as an option. Not everyone wants aggressive treatment especially if it is only going to prolong pain and suffering. Good palliative care aims to provide quality of life not quantity of life. It is interesting that Palliative Care and MAID have become separated like this. Aggressive Treatment, Palliative Care and MAID are all choices patients have the right to choose. Odd that there is often little discussion about the consequences of choosing Aggressive Treatment. But, I suppose it is much like the discussion at the opposite end of the continuum when dealing with the issue of Abortion. People have strong views about what is right and wrong but nonetheless these options are now a legal right and choice.
      Hide Replies (5)
      • MAIDadvocate about 2 years ago
        I wonder why there is a separating of palliative care and MAID? Who decided to do this and why? Ignorance and avoidance of what is available is continuation of the secrecy about death and dying. Why aren't there more articles in the papers - local or national of community. The more you talk about things that are taboo, the more you expose ignorance and lack of knowledge.
        Hide Replies (4)
        • NurseDar about 2 years ago
          I think the idea of MAID as part of Hospice care is evolving as many more patients are choosing MAID as an option even after they have been fully educated on what exactly their options with palliative care would be. I think the Hospice folks (myself included) had difficulty embracing it as an option because we see that death with good palliative care can be a meaningful, important, comforting, dignified and a deeply spiritual experience which some people do not experience until the eleventh hour. Because it may not be realized or experienced until near death those choosing MAID may not have it all. It's definitely not black and white and a tremendous amount of thought has to be given to the decision. Of course who, what, where and why one wants to live or die plays into the decisions people make. Our role as health care providers is not to judge but to support people in their well-informed choice.
          Hide Replies (3)
          • MAIDadvocate about 2 years ago
            I agree that MAID would be a good addition to the Hospice care option as those who chose this route, and not lightly at all but with great insight, for themselves but also in regards to how this will affect those left behind. The people who chose that route are not living a good life and have no relief or treatment options, and they must meet rigid criteria. I think that they spend a fair amount of time reflecting on their lives and stand by their values and make decisions that many could not imagine.
            Perhaps our shared experience as health care providers may be quite different.
            I disagree though with the comment that "Our role as health care providers is not to judge but to support people in their well-informed choice". This is not the case with many health care providers as evident in the inactions and actions of physicians with our end stage chronic patients where I worked for half of my 40 year career in health care.

            Many health care providers will never have the conservation of death and their wishes with their patients even when they are in their 90s.
            Many more people will never discuss death and dying period with anyone unfortunately let alone with the people they are closest.
            Nor does it ring true with refusals from the religious hospitals (health care providers) here to even allow a pamphlet or anyone come to discuss MAID as a legal option, and the final insult is to refuse/block transfers of the patient to a facility that is willing to accommodate at least discussions about MAID
            Then there are the physicians who refuse to refer their patients, whom they have known for sometimes decades, to those who can provide information on MAID because of their own personal beliefs. Many physicians have made the provincial process of MAID and accessing MAID much more difficult for patients because it conflicts with their beliefs.
            Finally, in long term care facilities that I have been in, there is never anything written or provided or talked about re Palliative care (nor MAID)- something that I would think would have started in long term care where we know that quite a few residents end up dying alone - that certainly is not a comforting, dignified and deeply spiritual experience in my mind.
            My wish is that health care professional face reality that their patients will not all be cured and will eventually die, so they did to talk with their patients about what the patient sees as a good end to their lives without prejudice.
            Hide Replies (2)
            • NurseDar about 2 years ago
              Hoping the government that initiated these discussions are taking note and listening!
              Hide reply (1)
              • MAIDadvocate about 2 years ago
                me too.
  • Depression baby about 2 years ago
    Raising awareness for the special populations may be an exercise in futility if palliative care is not available or appropriate for rhe special needs individual. We are living in an era of consolidation - ever larger hospials, ever denser concentrations of medical specialists - leaving the low population areas often stranded without access even to basic health care. This is a truth universally avoided in most health discussions and one of the pressure points that is depopulating our northern and rural areas. Sporadic programs have attempted to address the issue but i venture to guess that success is limited.
  • BSlawich about 2 years ago
    This can be raised through public information campaigns in the languages that these populations will find accessible, as well as in their communities. Community information sessions as well as community information telephone lines can serve to give persons in underserviced communities further information as well as the ability to advocate for access.
  • yeold about 2 years ago
    We must have more palliative care services, included brick and mortar buildings available in rural areas. The space could be part of an already existing facility, but at the very least a hospice/palliative wing should be available to all within a reasonable driving distance where at all possible. More education on hospice/palliative care and more options given to people with a terminal or life threatening diagnosis with appropriate funded supports would assist as well.
  • fernandlily over 2 years ago
    I think there needs to be general education throughout the society as a whole...the misconceptions of the role of palliative care are huge and therefore, most people could be considered a "special population." There needs to be more access to inturpreters that could be at bedside to help with difficult conversations. There needs to be more hospice beds throughout cities and provinces so there is a congruent environment for the philosophy of PC to be implemented. There needs to be WAY MORE psychosocial resources for community dwelling people with end of life care needs. There needs to be more caregiver support resources. There needs to be more resources in the inner city...the list goes on....I think that in order for special populations to be included more regularly, the "conversation" about palliative care has to change more broadly. There is so little funding for the programs that are already running, how could we possibly direct some of that money to "special populations?"
    Hide reply (1)
    • MAIDadvocate about 2 years ago
      Just as there are people dedicated to specific concerns like birth doulas, only these people would posses the skills and knowledge on end-of-life care. This would take it out of the medical hands and into the social realm of concern where it belongs. This way religious objections and refusal to accept people's requests for MAID as a legal option cannot be refused.
  • BennyB about 2 years ago
    Dr. Jay Children’s Grief Centre provides specialized palliative care services to children, adolescents and youth, when a child’s family member, or the child, has a terminal diagnosis. Our grief counselling programs are not means tested, and are provided to this underserved and often ignored population - regardless of the social or socioeconomic status of the family, free of charge. We agree with Health Canada that palliative care should be accessible to all people, and we know that families as well as professionals are often unsure of what to do or how to ask for help when children are involved. We know that the old paradigm of protecting children from death and dying must be changed and our team works with a family’s health care team, hospitals, hospices and other community professionals to provide awareness about the support and specialized programming available to help children and youth successfully cope with terminal illness, traumatic loss and grief. investment in non-profit programs such as ours is much needed, and would increase awareness and access to children's palliative services.
    Hide reply (1)
    • MAIDadvocate about 2 years ago
      I agree with this service and it needs to be applicable to all persons. I expect to die alone and therefore I would like to be able to count on someone to help me through the end of care process or have the option to access MAID. All legal options ought to be made available without prejudice to all who need it.
  • maddykate2 about 2 years ago
    the notion of palliative care needs to be normalized and taken out of the "expert realm" so that everyone has access to such a service through their GP or community health centre.
    Hide reply (1)
    • MAIDadvocate about 2 years ago
      I agree with this and would suggest that it be removed from the GP's job list as most are uncomfortable with the topic of terminal or end of life issues.
      I think there ought to be accessible community offices to access as needed for information or for services.
  • MAIDadvocate about 2 years ago
    Perhaps start with ensuring the there is something about Palliative Care (and MAID for that matter) in the LTC booklets that they provide to all residents/families on how to access Palliative care. It really should not be that difficult to do and in fact the staff in LTC ought to be the ones to discuss this with the resident/family instead of making the family go to the Nursing desk (strange requirement). We have to stop making access to care more complicated than it is and streamline access and provide it in everyday language. It has become to medicalized and dying is not a disease and really ought not to be under the medical purview. It ought to be separate entity which includes all legal options for end-of-life care.
  • hopeful caregiver about 2 years ago
    I believe that we need to acknowledge that Palliative Care needs to move outside of the hospital walls and develop partnerships with underserved populations. We need to go to where they are and create dialogues with the community supports and homecare programs to reach these vulnerable populations who are dying without adequate care. Special funding should be provided to existing programs to create service delivery teams and partnerships and we need to share this knowledge and learn from each other.
  • Hukie about 2 years ago
    In my personal experience of medical care, I see providers always doing their very best for everyone of the patients in their care, no matter the situation ndividual's circumstance. We cannot ask for anything more from medical care providers
  • VictoriaBCJB over 2 years ago
    Increasing awareness: Most people only ever find out about palliative care in their last month or weeks of life. Few talk openly about it. This is unfortunate. I like to quote the head of palliative care in a renowned teaching hospital, "When I give out my business card, people change the subject or walk away." Bizarre. The experience of volunteers is similar to mine. People ask what I do and I'd say volunteer. Volunteer in what? In palliative care. How can you do that? So we end up in a long eye-opening conversation.
    It is all part of the continuum of care. I am a proponent of early palliative care. You simply want a PC MD, NP or team in your care plan. Their only role is keeping you comfortable, symptoms managed. So it's acute care, palliative care, EOL options including MAiD when you might want to hasten your journey. All work together. Not silos.
  • Apple over 2 years ago
    1. Please include children in your planning. They too have been left out of the delivery model. Canuck Place is trying to fill that gap for all of BC - and doing a wonderful job.
    2. As an immigrant with no family in Canada and a parent whose young child died of an incurable disease, I am now forced to plan for an end of life with NO family to support me. It's very scary.
    Hide Replies (3)
    • NurseDar over 2 years ago
      I'm so sorry for the loss of your child. There are no words to convey how difficult that must be for you. Please know that there are good palliative care supports in many parts of B.C. that support patients who are entirely on their own. Take care
      Hide Replies (2)
      • 2old over 2 years ago
        It bothers me to see that the response is that there are good palliative care supports in many parts of B.C. Good palliative care supports need to be in ALL parts of this country. I live in Ontario and have no clue about the supports that are available in my community. Do I need to look into what areas of Canada are better than others and move there while I still can? That should not be the case! Good supports should be available to all, regardless of where you live or what socio-economic group you belong to.
        Hide reply (1)
        • NurseDar over 2 years ago
          Exactly! I am hoping this is why we are having this discussion about a Framework for Palliative Care for ALL Canadians. Enough talk Government of Canada we need action!
  • Delta Starr over 2 years ago
    Continue with education so people are aware what the term palliative means, have open discussions on palliative and end of life care. People are afraid of talking about what is uncomfortable and this is one of those topics. The more the topic is out in the public the more awareness it will bring, if they don't see it how can they know about it and what they are able to advocate for.
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    • 2old over 2 years ago
      Great Point!!! People are talking a lot about their right to die because more people and not wanting to just prolong their life if it means reducing their quality of life. The media needs to help with educating people about the options... assisted dying, palliative care whatever, instead of just sensationalizing the ground breaking court cases.
  • palliumcanada over 2 years ago
    Pallium Canada agrees that palliative care should be accessible to all, regardless of their health, socioeconomic status, language and geographical location. Awareness of palliative care services and supports is critical to improving access. In our experience, education, community engagement, and collaboration are required to successfully raise awareness. This includes training of front-line health care workers, social workers, and first responders about how to deliver an early palliative care approach appropriate to their setting and increasing their awareness of the broader services and community supports that are available. At the same time, we need communities and community organizations engaged to build and provide supportive services, raise awareness and create connectivity back to the health care system.

    Pallium is doing its part by working to adapt its LEAP courses and products to better meet the needs of vulnerable or underserviced populations. For example, we are working collaboratively with Indigenous communities to integrate Indigenous perspectives into existing courses; we are building strategic partnerships to better support French Language Minority Communities; we are working with partners to develop a LEAP Equity that addresses the needs of homeless and other disenfranchised or vulnerable persons; and we are working nationally to facilitate the growth of Compassionate Communities across the country, which includes a focus palliative care for the homeless and imprisoned. All of these efforts could be accelerated and expanded with stronger support and investment.
  • Cmcallister over 2 years ago
    There is insufficient awareness in the whole population, not just special populations. People used to live with death every day....war, animals on the farm, accidents. Medicine has become so good at prolonging life and people (society) have become so insulated from death that it is unacceptable to “give up”. In the UK they have undertaken a public health approach to death and dying and introduced it as a topic in the public school curriculum. This would be one very effective way of helping subsequent generations understand that death will always come and choice is to have a good death rather than a prolonged existence with suffering and worry and waste of resources.
  • Godindupes over 2 years ago
    Make it part of health care. Teaching up coming practitioners what palliative care can do for their patients with no cure available. To live whatever time is theirs pain free with good care and support.
  • OncNurse1010 over 2 years ago
    Educate Heath-care professionals throughout the entire length of the program whether Medicine, Nursing, Social Worker etc. They need to be aware of the goals of palliative care, the role they have in helping their patients access this care & the importance of early introduction of the role palliative care, learn how to speak with patient's and family about palliative care and how it can be implemented in their care plan not only at end of life but to help manage symptoms and provide support while they are still in active treatment. We also need to provide information to the public so they also know what palliative care is and that the goals are not only focused on end of life care. There also needs to be resources available for individuals to access. Education of both the public an health-care workers should emphasis that all Canadians have the right to access palliative care that meets their individual needs.
  • Shelley over 2 years ago
    Palliative care should be accessible to all, regardless of health, social or socioeconomic status. Community (LHIN, Social Work, Mental Health) raise awareness through programs or departments these populations frequent.
  • quality improvement coach over 2 years ago
    I work with folks who are part of underserviced populations and those from a wide variety of cultures. I agree they are very much in need of help with services and support with care needs. I also see folks who have lived in Canada for many generations who are struggling to understand the healthcare system and find appropriate palliative care services for themselves or loved ones. We need a strategy that includes everyone. There are services available, like residential hospice, that people do not know about or are hesitant to access if they do happen to be aware of them. I know dying at home is maybe the first choice of most people, but I can't help wondering... if residential hospice care was better known or widely available in Canada, would people be choosing that option more often? There is so much support in 24/7 residential hospice care for the person who is dying as well as the family unit, however that is defined and it doesn't cost the patient or family a thing! It's an amazing program!!
  • endmatters over 2 years ago
    Social media, doctors offices, libraries etc. are great places to educate the public - but marginalized populations are unlikely to receive that information for many reasons not the least of which might be because of language barriers or because they are on the street and rarely visit those places. Frontline health professionals (whether part of a traditional hospital medical team or at street level as an outreach team) are best placed to provided information and to explain the concept of palliative care patients who are terminal or nearing a terminal status. Palliative care must become a normalized. Everyone needs to receive the message that palliative care is a way to 'live' with dignity and comfort at the end of a life rather than signifying a threat or something to be avoided at all costs.
  • Apollo Alias over 2 years ago
    Allow free access to any unsatisfied or underserved patient to the administrative offices, with no restrictions on the language they may use or length of stay. Eventually, the staff may become better educated. Currently, all the abuse only goes out their doors.
  • Apollo Alias over 2 years ago
    Just listen to yourselves! You want the non-existent family to advocate for access for single people. You are looking for a licence to fail again right out of the gate.
  • MalcaR over 2 years ago
    Ensure continuing education on this subject via social media and that medical schools integrate the subject into the curriculum
  • valeighgirl over 2 years ago
    Ensure that when policies and procedures are developed that they take into account these vulnerable populations, so that things like not having a fixed address does not limit their ability to access the care they need. I just had a colleague today ask me about providing palliative care for a homeless individual in regards to the safety of storing opioids or introducing a CADD pump.... things I had never thought of before. These are difficult circumstances, but we somehow need to address them.
    There have been many stories that have come out of the US about hospices that have developed within penitentiaries, where the inmates care for other dying inmates. I think this would be a miraculous initiative to undertake in Ontario.
  • jo over 2 years ago
    Ensure health care professionals receive training as part of their formal accreditation; place posters in doctor's office, health clinics, seniors' facilities, social service agencies, libraries, high schools, offices of elected officials, penitentiaries ...etc ... where people who need help may actually see it.
  • David over 2 years ago
    Palliative care must be included as a key component of services offered to the special populations. It may, for whatever reason, have been overlooked, as the emphasis has always been on assistance for life. We need to add assistance for END of life to the menu of services provided. This needs to be part of the core services provided at provincial levels, with access made available via the medical personnel who care for these individuals. If the medical professionals are not aware of such services, the provincial authorities must make them aware, and train them on when it's time to recommend access and how to obtain such access.
  • NurseDar over 2 years ago
    Agree with the comments so far about the need for continued education for general public and for medical doctors. Perhaps what is needed are outreach teams that are designated by health authorities within acute and community care that can facilitate providing palliative care to "special populations." However, if we can provide other services to "special populations" through the assistance of outreach teams, clinics and societies then why should access to palliative care be any different? The health care dollars spent on futile aggressive treatments could better be spent on these types of initiatives.
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    • Visionary2018 over 2 years ago
      Agree. Outreach teams, outpatient clinics and home visits with Palliative trained NPs and nurses are one option. People with drug addictions often develop infectious endocarditis requiring palliative care. This population often dies young with heart valve disease. Funding for palliative care must include working with drug addicts. Posters in bus depots, safe injection houses are suggestions of reaching this population.
  • Maureen over 2 years ago
    Difficulties in providing service to rural areas has been an issue for decades. If we can have the rural home care nurse, doctor or NP do a Skype linkage with a Palliative expert and the patient it would be a tremendous help.
    When families are in crisis they need a hospice type service . We need more hospice service .
  • cam over 2 years ago
    I believe education is key to ensuring access to palliative care. As some of the most front line people that would address other health concerns to "special populations", Doctors need to be trained and educated on palliative as well as home care nurses. There needs to be information readily available where people are and through online resources.
  • Tsawwassen over 2 years ago
    I think it probably has to come from the family physician or clinic/hospital.
    It is hard for me to see how someone will access palliative care if they cannot access the health care system. that must come first.
  • DRED over 2 years ago
    tough question ... and I am not convinced that it really is different today from when the delivery model was developed. There are clearly some societal changes in family structure, immigration, etc. but I think there has always and will always be some difference in accessibility.

    For different cultures, there are quite different ways of addressing palliative care ... the system needs to be adaptable to deliver properly to t those people.

    For some in poverty, on the street, etc, there is no desire to be in the "system" ... they would rather do it on their own or with their peers.

    The only ways to raise awareness are through communication (would need to identify the most suitable media and messaging for each identified group) and demonstration of the value of palliative care through communicating "successful cases" within these communities.
  • Paul G over 2 years ago
    I refer you to Canuck Place in Vancouver. A family centred respite centre and hospice for critically ill children, or children whose diagnosis indicates a significantly compromised life span. Their family centred support for these children is beyond comparison and includes counselling as well as medical care.
  • eegr18 over 2 years ago
    the number of people who may not have ready access to exemplary HPC is a concern, from Immigrants who do not have English or French as their first language, homeless people, underhoused, poor, rural, remote and remote Northern communities, prisoners, ....and so many more that lack formal and informal support ...I think continuing with resources like CVH ( because of their excellent outreach and the fact that they are trying to access people who do not speak one of Canada's official languages ) , advertising, making the issues and services known, training informal carers as well as health care professionals from day one of their training and not just a few hours here and there as an add on ....have information at every doctor's office, every health clinic , every social service agency, libraries, rec centres , high schools...etc ...in short where people who need help may actually see it
  • research over 2 years ago
    destigmatizing the notion of palliative care, including special training during medical school for physicians and updating their knowledge during career, and understanding cultural perceptions would help