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## Discussion 3.2: Person and Family-Centred Care – Self-Reflection

over 1 year ago
CLOSED: This discussion has concluded.

When you think about your own death, what is most important to you? (examples include location, who is near you, what type of care, how much time to prepare, etc.)

This consultation is now closed.

***********************************************

Dying for me means that:
Location will be situated on what resources can be provided- I acknowledge the setting would ideally be at home, but may not be attainable.

I want open, honest and consistent conversation with my children and myself throughout my care.

I would like to have the ability to assist in pain and symptom management decision making for as long as possible.

I want my wishes to be discussed- my preparations made in line with what I can afford and my values.

I want to die in peace. And I want my children supported so that throughout the process they will be educated about grief- to eventually find their own peace. And be aware for their own eventual mortality that dying can be beautiful and exceptional.

Dying to me means we are building a social legacy that challenges the current practices... our literacy and awareness need dramatic attention. Dying is part of our life.
When I think of my own death, what is important to me is the help and support for my loved ones and me. I need to not feel pressured to end my life prematurely because an outside agenda or to meet someone's bottom line. I need to feel safe, valued and cared for. I need to know that my every breath doesn't mean extra financial burden for my loved ones. I need care, pain control, counselling and the time and space to get my spiritual. emotional, psychological/interior life in order. And I believe that my loved ones would benefit from having the support of the medical staff etc. to meet mine and their needs as best as possible.
When I think of my own death, then I think of the spectrum of possibilities of a sudden death or a slow decline. Of being lucid to the end or of developing dementia. What is most important to me is that I continue to 'live' each day until my natural death. To be at peace spiritually and where possible, that troublesome symptoms will be controlled but without hastening my death. It would be ideal to die at home surrounded by friends and loved ones, but the setting will not change what is most important. For me what is most important is inward peace. I am presently considered healthy but I have already prepared for my death as it can happen anytime. I do not know what tomorrow may bring but if I will die tomorrow, I will still plant a tree today.
Spiritual care, family, appropriate pain medication if needed.
I need to be at home, in my own bed. I need to be cared for by people who love me, know what my life was like, know what I really like (brownies) and really don't like (heat). I have prepared a lot for my death and I'm confident I can pull it off at home. With lots and lots of beautiful music.
Have near my loved ones. Die without pain, anguish or distress. Be cared by nice and loving people that treat and care me as a person. With time to prepare to leave things closed.
I have made a decision not to go to a nursing home. When that level of care is required for me, I expect to access Medical Assistance in Dying. If the Canadian legislation has not been updated to include advance directives and the Supreme Court recommendation that the suffering is "according to the person", then I'll be on my way to Switzerland where they are more progressive in this area of care. My family is aware of my wishes. We have had many conversations about it.
Pain control, someone holding my hand, hopefully my daughter - she would want to do that if she was contacted. Years ago I got all my funeral arrangements and cemetery plot paid for...I would always want to know the truth about my prognosis. And being able to listen to music i love would greatly help me with my final days or weeks if I was in palliative care. Hadn't thought of that before. I should probably make a "palliative care" playlist - not just the songs I want for my funeral. I still have all the cd's I put together for my dad to listen to when he was in his hospice his final weeks.
Physical comfort, the love and gentle care of others, clear-mindedness as much as possible, and Bach solo cello suites!
So long as I am allowed to die in a way that is completely natural (not induced or sped along in any way) and in accordance with my moral religious beliefs after I have been given my Last Rites and, ideally, in the presence of loved ones, I'm not picky.
I want to be at peace with dying and pain free.
I believe in the Judeo Christian end of life care requests, that is ordinary not extraordinary interventions/supports when I am dying ... hydration pain control if necessary and allowing the natural course of death to unfold. My affairs are in order. We have discussed our wills and wishes with our adult children. I have written a type of memoir for our grand children. I think these are important 'gifts' to those who survive us. would like to die peacefully at home. I am not afraid of death nor of pain.
Already answered - I want choice over medical treatment including a medically assisted death. If I no longer have capacity, I want my advance care plan to be respected in terms of medical treatment (or withdrawal of same) and MAID choices. I will likely want close family with me in a hospice (or whatever venue is family friendly so they welcome). I will have already said good bye to close friends. I should add that I am not sure about dying at home because this can be more stressful for family in my limited experience.
I want to die at home or in a hospice, not in hospital or LTC. I want to have all my affairs in order with neat lists for my family and executors of what to do after I die, where to find things, etc. I would like to have written my goodbyes to those I love and who have loved me. I would like to have my pain and discomfort treated but I would like to be conscious. I would like to be able to communicate, give instructions and make decisions about myself and my care. I would like the option of medically assisted death if I wish or if palliative care does not manage my pain and discomfort. I do not want to starve to death (a common fate). I would like to see family and friends briefly who want to be there but I would prefer to have spoken to them before because I believe that dying is essentially a lonely process and event that must be taken alone and hopefully with awareness and mindfulness. I would like to be able to see the sky, feel the air, and possibly be outdoors for a while. I would like my husband to be by my side or even lying next to me, holding my hand. I would like silence or very quiet music. I would like to be happy with the life I have led and I would like to know when the time comes.
Being made comfortable and not in pain, family members with you.
I refuse to be in a hospital setting when I take my last breath. The overuse of morphine and other narcotics to relieve pain often hastens death prematurely for many elderly patients who enter hospitals. It also means that they may not recognize their loved ones at the end, as they suffer from drug-induced hallucinations. After watching friends and loved ones die in institutional settings, I have instructed all of my loved ones that I will only accept palliative care at home, whatever the associated costs may be. Pain relief does not need to include narcotics or other drugs that rob people of their dignity. Non-psychotropic forms of CBD and other natural remedies may serve as alternatives.

There are virtually no functional medicine doctors in Ottawa (one in private practice, and only one holistic oncology centre) and relatively few in the rest of Canada, compared to Europe or even the US. When you only have a hammer (surgery, drugs, radiation, chemotherapy) everything looks like a nail. We are not placing sufficient emphasis on functional medicine that treats the whole body, starting with the health of the microbiome. When inflammation is the source of cancer, heart attacks, strokes, dementia, auto-immune diseases and many preventable deaths, we need to invest in educating Canadians so they can assume responsibility for their health outcomes. Instead of turning out general practitioners who treat symptoms, expensively, and who frequently fail patients, we need to enhance the number of functional medicine practitioners who understand the human being as an integrated whole and the interactions between patients and the environment in which they live.

The federal government has abrogated many of its sacred and legally constituted duties for ensuring the safety of our food supply, a huge source of inflammation and toxins, approving factory-farmed and genetically modified fish, little to no enforcement of insecticides, fungicides, pesticides, used in food crops and in aquaculture operations.

We desperately need more functional medicine doctors. That would significantly improve health and longevity outcomes for older cohorts. Far fewer patients would be dying - or need palliative care at all - and would die in their sleep at home, like many of my family members, late in their 90s or as centenarians, well past the age of 100, if we placed the emphasis on the front end of life and taking preventative measures: eating only organic food stuffs; using water filtration systems that remove arsenic, heavy metals, plastics, bacteria, parasites, fluoride, chlorine, bromides, chloramines, chemicals and other toxins; using only natural cleaning supplies in our homes; using Victorian-era, chemical free gardening approaches to grow food, as I do; buying only wild capture fish, from certain waters and countries of origin and never farmed fish or fish from Asia; not buying factory farmed meats where these living beings are treated abysmally and are fed sub-standard grains, corn, soy, even candy, instead of the grass that ruminants are meant to consume - as you can only expect to be as healthy as the animals you eat, and whatever they ate is what you are consuming in turn. Accordingly, I do not eat my fellow mammals and neither do any of our family members who have lived to be over 100 years of age. We only eat wild capture fish and we are very selective about what we ingest.

An investment in functional medicine and educating people about their consumption habits would save billions in healthcare and in palliative care.
In light of new legislation allowing medically assisted dying, the most important aspect of my own death has now become protection from the medical system that may wish to hasten my death. MAID in Canada is in its infancy, and as the legislation matures, and society's acceptance of allowing people to end their lives increases, there will surely be those outside and within the medical profession who feel their judgement on the quality of my life supersedes my own wishes. If and when necessary, I wish for myself to have properly funded and administered palliative care, and I do not want to have anyone decide to end my life prematurely simply because their values do not match my own. It is a well known fact that many Dutch elderly fear going to the doctor because they fear that their decision to not seek euthanasia will be overridden by the medical community. Now that Canada has legalized euthanasia, I share their fear; I also fear that, as a result of our euthanasia law, palliative care will not be properly funded in the future and the "less expensive option" of killing the elderly will be promoted. This fear is not unfounded as the Canadian Medical Association Journal has already published an article showing modest, but demonstrable savings through euthanasia.
I totally agree with the comments made by this person. I fear that the legalization of euthanasia is opening the doors to a future in which we allow extermination of those who are draining the healthcare system - those on life support for extended periods, the infirm elderly suffering from dementia - to name a few. I also would like to add that the requirement of healthcare practitioners to provide a referral to doctors who provide euthanasia even though they are conscientious objectors is offensive and against one's personal freedom to choose. Shame on those who are responsible for this legislation.
I want to be able to choose to hasten my death with MAID and especially I want to be able to seek MAID if I have a diagnosis of dementia and put my wishes in an advanced directive (if I can no longer recognize my family....feed myself...use the toilet....whatever....)
I want to know that when I choose comfort care (no longer striving for a cure) I will have full guarantee to the best there is of symptom control and support to my family and all the elements of full palliative care....not be on a wait list! If I cannot trust this to be the case....of course I will advocate for MAID....
Relief from suffering in the shortest duration possible. Assisted suicide with my family and friends around me if they choose to be there.
I want to be in my home province, not this one. I would like to be home for as long as possible. I would like to be in the hospice my dad was in for the last days. My husband and children are with me. With diagnoses i would like a time frame. I will receive only meds to make me comfortable, no drastic measures, no prolonging things with meds that have side effects that will take away from quality of life.
As a family, we were fortunate to be able to allow my father to die in his own home. He died of colorectal cancer in his 62nd year. Unfortunately, the same was not possible for my mother who, for years before she died, was institutionalized because of debilitating dementia. My wish would be to be able to die at home. I would hope that, if needed, I would receive palliative care in the comfort of my home. If the provincial health care plan does not cover the costs of nursing care, I hope that I'll have enough savings to pay for the added costs.
I would want to die in my home, with my family around me. I would want palliative care nurses coming to my home to support not only me, but also my family. How much time to prepare? As much as possible, I guess. I would want my pain taken care of, and the right to assisted dying if that was what I needed to happen. I would want to see the sky and feel the sun on my face and smell the grass and the flowers. And I'd want some music and stories.
That I have a voice in my care decisions, honoured by respectful, culturally-safe health and allied professionals.
Educate people to learn about Powers of Attorney, Powers of Personal Care, Living Wills - talk about their wishes with partners, family and close friends. This is so important yet these conversations often do not occur - people do feel uncomfortable when speaking of death but it needs to happen.
As a medical professional, what is important to me is:
The ability to tailor my end of life care to my specific needs, the space to have these discussions, the resources to ensure my affairs are in order and a competent set of professionals guiding the process.
Most important to me: CHOICE. Choice about my location (home or hospice or ??), the loved ones I wish to be with me, and that it is painless and quick. I will ensure my wishes are written down and that my family knows them so there is no question about what is to be done. Just let me go on MY TERMS no on the government's terms or the hospital or doctor's terms, etc. MY TERMS.
What's important to me is to have some choice over what is happening to me. This includes the ability to request assistance in dying, but also, prior to that, to have input to treatment, where I'm staying, etc. I don't want to be in pain. I don't want to be immobilized. I don't want to be treated like a vegetable or a discard. And If I am truly a vegetable or have severe dementia, then please put me out of my misery!
I want to have family and friends with me. And I'd really appreciate have caring support for them and me.
If it’s terminal and painful - help me go quickly and painlessly. I do not want to linger.

I would like to be able to make clear in advance the conditions under which I would not want to continue living. I volunteer weekly in a long term care facility and see the very low quality of life for those suffering dementia (which to me is equivalent to a very long, very slowly progressing coma). Personally, I do not want to be warehoused like that. I believe that we all deserve to make our own choice.
I do NOT believe the particular day of my death is my choice to make. That's God's decision.

Aside from our beliefs, the health secretary in the UK, "Jeremy Hunt, has just apologised on behalf of the NHS and government for 20 years of 'anguish and pain', following the publication of a major report which found that more than 450 elderly people were given life-shortening opioid drugs they did not need." In other words, Gosport Hospital staff killed them--but not at their request. The report found, for example, that nurses killed patients they did not like. Do you really want to increase the potential for such abuse?

Regardless, assisted suicide and euthanasia are not palliative care. I may be mistaken--but I surely hope not--palliative care workers are not the same staff as those who consider and carry out a request to die.
As I said, we all deserve to make our own choice according to our own beliefs. Abuse of the vulnerable is an entirely separate issue, and one that needs attention.
From what I have witnessed within two long term care facilities, it would never be my choice either. Since I am alone, a hospice might be an alternative but I really would prefer to be in my home with supports from the community services.
I agree.
We often don't have the luxury of lingering, if you can call it that. It seems to me that one should prepare oneself while still healthy and compos mentis leaving in written form one's wishes about the end of life - whether sudden or protracted, or trapped in a uncomunicative state. That means taking a personal responsibility for reflecting on one's life and the manner of one's death - and perhaps the aftermath. There should be a consideration for raising this in the educational system - preferably at various points between the ages of 12 and 18-19. Requiring students to address this issue within the context of public policy/health care and the responsibility an individual bears for their own life might be a greater value than so-called sex education, or at least both subjects might well be addressed in tandem.
The most important thing is to be able to make my own choices about my life including medical care wherever possible. I would like to be given access to all the available resources and information so that I can make an informed decision. I would like to be within driving distance of where I currently live so that my family and friends can visit if I'm not able to be home.
I am likely to die alone perhaps with a friend nearby but since I know this I would want the opportunity to connect with an end-of-care community service to assist me in the dying process rather than go to a hospital or LTC facility. It is not what I want. These people need to be able to access MAID for assessment and inclusion in that process if I so chose.
What is most important to me is being able to be with the people I love and who love me, and being as free as possible from suffering. Many people have talked about wanting to die at home but I'm not sure that's for me. I don't know if I want to place that burden on my family and have often wondered if it would be better to be in a facility e.g. hospice with trained staff who are prepared to handle any situations that may be too difficult for my family to manage at home.
The answer is going to be different for every person. That why we need to amend these laws so it does give everyone their right to decide what's best for them.

If you believe a hospice situation is what's best for you and your family then do it that way :)
• over 2 years ago
MAID
• over 2 years ago
It's a deeply personal choice and I respect your wanting to chose MAID.
Those of us who have had the privilege of practicing good palliative care sometimes have difficulty embracing MAID as they dying process can be a deeply meaningful experience for patients and families. We are more than just flesh and blood. But, as I said this is a deeply personal choice and we must choose what is right for us.
Assisted suicide is the antithesis of palliative care. Killing terminally ill people is easier and cheaper than journeying with them. As an analogy, just think of an unwanted pregnancy in Canada: do you want to abort, or do you want carry the child to term and give him up for adoption?

Assisted suicide is also wrong. Not just unacceptable or offensive but flat out wrong. As a Christian, I know that I may not kill myself. I need encouragement to live, not temptation to die before God would have me to die.
Could you please leave your god out of this. It has nothing to do with this issue and is just your personal belief that you have no right imposing on others. You've made your point concerning your beliefs and that's fine if that is your choice! The biggest problem is that there are millions suffering either with a fatal disease, chronic illness with no cure, severe depression where drugs and psychotherapy have no effect plus others who live their life in chronic pain. Those are just a few of the issues facing Canadians and having the right to choose to die when they want.

The original ruling indicated that there was no requirement for death to be foreseeable or even be dying in anyway. It was the Senate who added those restrictions on this bill and for that I can understand why they would make that decision because they don't know any better for one, they want to make it as difficult as possible to get permission so they look like they are trying to make a difference and be progressive but in all reality very few people are even qualifying for this even though they meet the current guidelines. Typical government doublespeak.

The most horrific aspect of the way through current laws work is that the people who are suffering the most and have the most need for the right to die are falling through the cracks at an alarming pace. If only we had followed in Switzerland's lead and done it right the first time.

I was with my mother when she died of cancer because she wanted to stay at home. She had a good day the day before she basically shut down. From then on it was weeks of her suffering for no reason other than to allow someone to suffer. What does that say about our society? We have no problems putting our beloved pets down when it's time otherwise it would be cruel. Why don't those same principals apply to us (and please don't bring god into this as he/she has no bearing on this discussion. If you don't want to do it then that's your choice and I respect that. Problem is the street has to work both ways so you need to understand how this can be a necessity for others).

I'm my case I've been suffering with 3 sleeping disorders (which have not let me work at a job longer than 2 months..aside from 1 job but that is the exception), severe depression (suicidal), and severe chronic pain in multiple areas of my spine. I've been fighting for just over 30 years now to try and get better without success. I'm 46 now and my biggest regret is that I failed my suicide attempt a few year ago. With all the warnings about fentanyl you'd think putting on 12 patches or so ranging from 50mcg-75mcg would do the trick but sadly it didn't.

Lack of sleep, chronic pain and the knowledge that there is no future for me aside from more excruciating mental and physical pain takes its toll. I'm not the same person I was years ago. I'm grumpy, bitchy and frankly don't like myself (neither does my family really) and my only support are 2 friends of mine. They mean well but have no clue what it's like to be constantly exhausted to the point of feeling like all your energy is being sucked out from your body, they can't comprehend that I'm essentially bedridden due to that plus the unrelenting pain every second of every day.

I WISH I had cancer. Yes, I actually said that and meant every word. At least that way I just might qualify to put an end to this "life" that is pure hell.

And what options do I have to finally put a stop to this. Absolutely none! This is shocking in any kind of civilized society. Of course I could go to Sweden and pay Dignitas a ton of money but I'm on disability and will never have the money to spend $10000-$15000 to be able to go though them. So now Im only left with a few suicide options but they all have a risk of either injuring someone else or if we use a gun as a method we are also scarring other people for no reason. I don't find those choices acceptable... do you?

Also due to the complexity of my symptoms and this rediculous crackdown of opioid medications means I can't even get a doctor in my hometown. I have to travel 15hrs+ at least once a month to see my original gp when I lived in Toronto and the pain clinic where I get my spinal injections.

Make no mistake, I will be taking my own life at some point. I just wish it could be in a proper setting where friends and loved ones could be there for me. Now due to the way the laws are setup I dont have that option so I have to use 2 methods that are essentially foolproof to ensure that there is no coming back to this torturous life.

The worst part is I'm far from alone in my misery and suffering (and trust me, I most definitely do suffer every second of every day with zero relief). And unlike cancer or other diseases that cause death I can go on "living" this way for 50 more years. So please, tell me why I don't deserve the dignity and respect of being able to say enough is enough. I've done my time, I've made extraordinary attempts to see any and every specialist who would see me to pray for just a little relief and yet nothing has improved but has only gotten worse over the years and decades.

We are the people who aren't being heard and who need it just as much, if not more than those with fatal diseases. At least they have death coming for them so there is at least a limit on how much suffering they will end up enduring. Mine is indeterminate and will go on a continue getting worse until the law changes or as anticipated I'll have to do this myself, alone, and with no support or love from friends and some family. Not only that but they get a nice surprise call or knock on the door with the bad news.

All this pain and misery for everyone involved could at least be mitigated by having the right set of laws in place.

And before trying to make arguments that people are getting forced into it etc please do some reading on the subject first to see what is actually happening and not make conjecture on things that are blatantly false and have no basis in fact.

Thank you
I want control of my health decisions regarding my end of life. Preferably at home with family. My family physician and specialist doctors provide me with options but I make the final decisions.
• over 2 years ago
I want to live life to my very last breath. I would like to die surrounded by my family, either at home or in a hospice dressed in my own clothes (my favourite tie dye shirt). I want my family and caregivers to celebrate the positives of my life while keeping me comfortable with palliative medications. Having compassionate professional health and spiritual care providers supporting my family comforts me. Though I am 56 years old now, I am having conversations with my family about what my death should look like, and am using the Serious Illness Conversation to guide the discussions. I believe we need to have a national strategy to guide end of life care discussions and having these sooner in life rather than later will save many from regretful deaths. Let's use the truthful words like dying and death because calling death by another name does not take away the fact that it still hurts, is final, but we have the control now to plan for it.
What do you mean by your statement that "we have the control now to plan for [death]"? Palliative care in Canada is lacking. For example, pain management could be much improved.
The question we were asked to comment on is 'what is important to us in our own death'? We are very blessed in this country of Canada. This is a forum to express our personal views on our own deaths. I see you have commented and sometimes challenged people on their own views of death by replying with your beliefs and views. While I agree with your comment that a national strategy for palliative care is lacking, I also sense that respect and mercy for expression of opinion in this forum is also lacking.
• over 2 years ago
I hope my death is as hassle-free as possible in terms of creating any burden on my family.
I want to be at home, making as many decisions as I can re: my life and death
I've written this many times, but I see it too many times--i.e. "hassle-free" death and not "creating any burden on my family"--we are naive, fellow Canadians! The RIGHT to die inevitably becomes the DUTY to die. Terminally ill people are being implicitly told that they are selfish to continue living and should do the reasonable thing and request the pill-bearing MAID in order to die sooner rather than later. Improperly socialized people like me--God helping me, no matter what my condition, I will never ask for assisted suicide!--will be found to be too difficult or incapable of communicating coherently--and others will make the rational decision for them. This abuse is not uncommon in Europe where assisted suicide and euthanasia have been legal for many years or possibly even some decades already.
Hello Nam, I wish to reply to your comment that "Terminally ill are being implicitly told that they are selfish to continue living and should....request the pill-bearing MAID in order to die sooner than later". My first question to you is, 'Do you work in palliative care or in a facility where terminally ill Canadians are being told they are selfish and having MAID presented in this way'? I work in palliative care and have worked in hospitals and hospices where terminally ill are cared for. I can honestly share that this has never been our experience; that patients are not having end of life care discussions presented in this way, nor have any of our patients had MAID forced or recommended in this way which you suggest. If coercion and pressure on patients regarding MAID is the case, then you have a responsibility to report this to health authorities. If you have heard this from another person, then I would encourage you to check out the truth of where these facts originated.
• over 2 years ago
It is important that my family be able to be around me freely, with enough room for them to do so, care that keeps me comfortable, and time to make my peace with God waiting for Him to take me without any help from anyone else. It is good that I be given meds to help with pain and to keep me comfortable but only enough to do just that and no more
Of course--and I'm quite sure you agree with me on this quibbling--you might die suddenly, e.g. in a traffic accident, and you should ALREADY have found peace with God. Encouraging yourself in this peace is a proper pursuit during palliative care.
• over 2 years ago
I hope that, by then, I have my affairs in order. I hope that my daughter will be with me. I hope that I have not been placed in a nursing home as my father was and as my oldest sister was. I hope that my death is a sudden one, not dragged out; but most have the latter, I think, and I may well too.
A sudden death rather than a death "dragged out"--that's the insidious temptation of assisted suicide. I, too, would rather have a sudden death--at the end of a full and happy life, e.g. dying in my sleep--but God decides the day of my death. That's not a decision for me or my caregivers to make (except in the case of choosing to forego life-prolonging treatment). So I regard assisted suicide and euthanasia as great evils--as worse than offensive and unacceptable.
Removed by moderator.
• over 2 years ago
I want to die in a calm peaceful environment with my family and close friends around me. I want my death to be a celebration of my life and the person I am/was. I would prefer to be in my own home but if my condition deteriorated to the point where that was not possible, I would want to be in a hospice. I want my caregivers to have a good understanding of palliative care; I think this is currently lacking. Time is an interesting question. I hope to have enough time to say my goodbyes and spend some quality time with my family but I wouldn't want it to drag on and become a burden to me or my loved ones.
You wrote, "I wouldn't want [my 'quality time'] to drag on and become a burden to me or my loved ones." It's one thing to forego life-prolonging treatment--which may indeed be what you mean--and it's another to force an end sooner than the natural course. Canada has opened Pandora's box, and your concern of being a burden is a big part of the way in which the RIGHT to die inevitably becomes the DUTY to die.
• over 2 years ago
Most important to me is to have my physical needs met (pain and symptom management), but also to be treated with respect and dignity.
What are respect and dignity? I'm not sure where you are going with your thought, but atheists subvert it for their own beliefs. The Christian understanding is that dignity comes from an original likeness to the Creator, God. He reserves the right to determine the day of my death, and so I may not kill myself. Nor may I kill anybody else--no matter how little, evil, ill, or suffering such a person might be. That's disrespectful. Assisted suicide is a base indignity.
Who is near me? On the one hand, I trust my family and church. They will pray and sing with me as I prepare to face my Maker. On the other hand, I have become more suspicious of doctors now that assisted suicide has become legal in Canada. As the right to die transforms into the duty to die--as in the wealthy Netherlands or poverty-stricken rural China--patients will become more suspicious. I have elderly Dutch relatives who are afraid to go to the hospital because they might not come out alive. There was a good reason for the age-old Hippocratic oath. Power corrupts, and absolute power corrupts absolutely.
• over 2 years ago
As a young musician and music therapist, I can think of nothing more important than a proper sound environment and access to Creative Arts Therapies as being part of my palliative care experience, if I were to have one. Working with my family to help process strong emotions and preserve memories, such professionals would be very welcome. I know that I would want music on my side, and a room with adequate light and color. During this time of transition I would trust the healthcare professionals to take care of my basic needs, but I would require additional help and services to improve the quality of my living during the final days.
• over 2 years ago
I think it is important to think of LOCATION OF CARE instead of LOCATION OF DEATH. We need systems that can easily move patients and families from one location to another (all of which provide quality palliative care) just incase "things go sideways" in your "ideal" care plan of how you want your death to be. In a society that largely avoids talking about death, never mind how challenging it can be to care for someone holistically with a terminal disease, I think it's pretty near impossible to predict what someone will want or need at end of life. Therefore, we need a seamless, malleable system that can accommodate patients and families as their needs change.
• over 2 years ago
I would hope to die at home (if that is feasible) or in a residential hospice, hopefully near where my family and friends live. I would hope there would be knowledgeable staff who could care for my pain and symptom management needs, and who could support me and my family as I am dying. I would hope that I can have my pain managed in such a way that I can remain conscious and able to converse without undue suffering.
• over 2 years ago
If I did not die of something sudden (accident, heart attack etc), I would want medical staff (doctors and nurses, PSWs) who were specifically trained in palliative care so I would have the right balance of pain meds, and personal care (you know being turned often with nice clean and warm sheets). I would like to go to hospice (I have one picked out) where friends and family could drop in have a chat and swab my mouth. And music would be very important - I would hope to have the playlist ready). And most of all being a Spiritual Care Practitioner, I would like a well trained, emotionally attuned SC Practitioner to come and talk about meaning, purpose, struggles, relationships and what it is like to emotionally, spiritually, socially be letting go of life as I prepare to die. And I would like to "bless"/"treat" a SC intern to one very good meaty encounter conversation with me that they could dissect with those peers they were training with in order to give back something to others - a going away gift I think. :)
• over 2 years ago
When I think about my own death, I hope that I could receive care to alleviate any pain that I might feel. Palliative care already largely does this. However, for as long as possible, I would like to remain at home surrounded by family and the familiar space of home rather than being separated from these people and placed into a hospital or care home full of other people who are also close to the end of their life.
• over 2 years ago
I have learned recently in my training for a hospice volunteer when you are first diagnosed you can access their services immediately. This would enable the individual to navigate through with a friendly volunteer. It is a very stressful time and very scary. What is unfortunate is that when you are first diagnosed you are in disbelief so you deny and then the individual wouldn't end up using hospice. I am so glad I have become a volunteer. The program is amazing. I would recommend it.
• over 2 years ago
The ability to plan my death to allow me access to MAID even if I develop Alzheimer’s or other disease affecting my cognitive function
• over 2 years ago
Every experience is deeply personal. Everyone's needs will be different. The options for respectful, compassionate comfort care and support should be available in every situation - whether it is in a hospital, a hospice or at home. In all those environments tho', it should be the 'dignity' model rather than the medical model that is the basis for care. I agree with the poster who said that death can be a deeply meaningful experience - but not everyone is ready or able to open their hearts to all that pain. Palliative patients AND families need access to peaceful quiet spaces, some hydration and nourishment, accurate up-to-date information, companionship, helpful or meaningful respite activity, and spiritual, emotional, mental comfort and supports. It's not enough to simply ask "how are you doing?" and accept the standard reply: "We're doing OK". There needs to be dedicated individuals on the care team trained to recognize and 'tease out' the real needs of the people they care for.
• over 2 years ago
I do not want to be a burden to my family. If I make the decision that it is time to go, then I want to be able to go, when and where I schedule it. It SHOULD NOT require that my death needs to be imminent before a doctor can assist. the pain could go on for years, and when I have had enough, let me go.
• over 2 years ago
When I consider my own death, what I need most is compassionate care including pain management by people who specialize in my illness. I would prefer to be at home or near to home. Hospice would be my first choice. I would want a Spiritual Care provider to comfort me and more especially be there for my family who will be distraught.
• over 2 years ago
This is not something that i regularly think about. I am happy with my life and what has been accomplished. When my time is up, I don't want to be isolated from my family and spouse. I would rather not be in a formal health care facility. Only in very extreme pain conditions would I consider assisted death.
• over 2 years ago
a team of caring professionals and informal care givers if needed, through LHIN/ CCAC and the option to access hospice or PC when the time comes if it feels like my family is overburdened or not comfortable with me dying at home....time to continue to do all the things i am able to do that give life meaning...time with friends, family, pets etc
• over 2 years ago
My wish for me would be to have the best possible palliative care for me and my loved ones. The setting would depend on where best meets my needs and those of my family for my situation at the time. Their are so many unknowns. One choses the best options at the time....having options and choices is a comforting thought. Knowing one is not going to suffer in a pain and every effort is being made to support my wishes and comfort and support my loved ones is the essence of good palliative care...cannot ask for more.
• over 2 years ago
Having seen that death can be like a labour - I am not afraid of some suffering or pain...but I hope for myself that it is not more than I can bear. All my relationships are in order, there's lots unfinished in life but there always will be Many I love have gone before and I believe they will greet me. So - other than needless overwhelming suffering I don't worry about it anymore.
• over 2 years ago
I don't want to suffer on the floor of my townhouse for 5 days before finally succumbing.

I'm nowhere near ready to go into a hospice or nursing home, but something could suddenly happen that rendered me unable to get and get to a phone, or even to press the button on my personal medical alarm.

We need some sort of monitoring, could be automated monitoring, that will raise an alarm if we're unable to respond, perhaps to a daily automated phone call.
• over 2 years ago
my ability to still have control over my surroundings and type of care. My ability to do it "my way".
• over 2 years ago
Being honoured for who I am, not being limited by my diagnosis. I'd like to get outside as much as possible with my loved ones, and have quiet/alone time throughout the day too. I'd like to die with music playing, and with my paperwork in order so that family aren't burdened by my death.
• over 2 years ago
We believe that person-centered care is critical. Pallium understands that the quality of life of patients encompasses the physical, psychological, spiritual and social domains. Achieving the goal of improved quality of life, respecting advance care plans, and supporting families requires a person-centered approach to palliative care. Person- or patient-centred care is and has always been at the core of what palliative care is all about. For that reason, all the LEAP courses include integrating these domains in everyday care.
This holistic approach is further supported by the Compassionate Communities theory of practice that Pallium has adopted to guide its community engagement efforts. A Compassionate Community is one community that recognizes that all-natural cycles of sickness & health, birth & death, and love & loss occur every day within the orbits of its institutions and regular activities. Its residents recognize that care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyone’s responsibility. This model includes consideration and understanding of the importance of personal choices regarding death. Regardless of what an individual’s wishes are, Advance Care Planning (ACP) is an important tool for patients to ensure that their wishes are respected at end-of-life care, when they become unable to speak for themselves. Pallium supports health providers with tools and resources on how to discuss ACP with their patients and families properly, allowing both sides to have meaningful conversations about aspects of dying, such as location, which are important to help individuals and families have a better quality of life and gain a sense of empowerment over their death.
• over 2 years ago
Being at home with family and friends able to come and go while having the necessary care for comfortable. Should this not be possible being in a stand alone palliative facility that would provide a similar environment.
• over 2 years ago
I want Trained spiritual care Providers to provide 24 hour support to me and my family at end of life both at home and in hospital.
• over 2 years ago
My husband died at home by choice. My son died at home suddenly. Both deaths were even more traumatic for me than they would normally have been because of serious gaps in the system. I am engaged with the healthcare world to try to address these issues, but despite the good work that is now happening, I would choose to die in a hospice if I can. My husband had unforeseen problems that no one helped us with, so now I am very frightened of dying this way myself. And I do not wish to burden my other adult children with possibly witnessing things they cannot unsee. Until there are demonstrably reliable supports for home deaths, I would not choose that route.
• over 2 years ago
Most important to me is dying with dignity. Support for me and my family and friends who will care for me at end of life. Someone to be with them every step of the way, to answer questions, to just be present. I would like to have support of family and care to make sure I am comfortable. If suffering with a terminal illness I don't want extreme measures to prolong things, let me be comfortable and enjoy what time I have left. I want the best medications available and to be informed of these medications and other options for pain management. I wish to be placed somewhere they can assist me to dye with dignity without suffering. I would like to die in a manner that leaves my family feeling the best they can about a difficult situation. Providing care to patients where they want it and allowing whomever they want to be around them. Also, provision of support to caregivers is key. Educating professionals with the proper tools to give the palliative patient what they require is also key. At this time, my preference would be to have a home death.
• over 2 years ago
Support for my friends and family who will care for me at end of life. Someone to be with them every step of the way, to answer questions, to just be present. At this time, my preference would be to have a home death.
• over 2 years ago
Being secure that my Maker is for me not against me, knowing that I have said what I need to say to those I love.
• over 2 years ago
Most important to me is dying with dignity. I honestly hope I die in my sleep. If this is not the case I would like to have support of family and care to make sure I am comfortable. If suffering with a terminal illness I don't want extreme measures to prolong things, let me be comfortable and enjoy what time I have left.
• over 2 years ago
Not becoming a burden to my family, causing them undue stresses to look after me. I wish to be placed somewhere they can assist me to dye with dignity without suffering.
• over 2 years ago
I would like to die in a manner that leaves my family feeling the best they can about a difficult situation. To be honest, I think so much about other people's deaths, that I haven't given much thought to my own.
• over 2 years ago
I empathize with the thought of not causing a "difficult situation" . What is difficult for one family may be very do-able for another and often some of the difficult times brings families together to experience some real time of reflection, memories, fun and of course grief. Those last few days can provide a gift to the family where they can demonstrate their love and loyalty by doing those final acts of comfort.
• over 2 years ago
I wish to be in a comfortable environment, ideally at home but if not possible then at least somewhere with people who know what they are doing and are caring for my family as well as for me. Compassion without knowledge isn't enough.
• over 2 years ago
All I want is the ability to say good bye, where i am when it happens is not as important as being able to tell those around me that they were important to me and I cared for them
• over 2 years ago
I would like to have as much prepared in advance as possible, I have recently purchased my niche, I have though about songs that are important to me, I would perfer to be at home or in a free-standing hospice and NOT in hospital. I would appreciate if my children could be with me. I have to update my will it is very outdated 2003, YIKES...
• over 2 years ago
I have always been a private, introverted person who enjoys the company of a few close friends and my family. I can only hope that when I die someone will care enough to be there to support me as I will for them. I do not expect, I can only hope.
I would want to know what was happening or what was to come with my health status so that I can prepare. I would like to die in my own home providing that is manageable. I want to be treated with dignity and respect during the process and after I die. I hope that my family will be supported as needed after.
• over 2 years ago
Providing care to patients where they want it and allowing whomever they want to be around them. Also, provision of support to caregivers is key. Educating professionals with the proper tools to give the palliative patient what they require is also key.
• over 2 years ago
In all likelihood I would want to die in a hospice, with someone holding my hand. Being at home is too much of a burden on family, but I believe I would want to be with someone - anyone caring - as I actually died. No pain!
• over 2 years ago
Not being a mental and physical burden to my family and close friends. They should not have to be worrying about my pain status, difficult personal care needs, finances.
Making sure that I (if I'm compus mentis) and my immediate family and caregivers are fully apprised of the situation, how things might go and what they will look like, where they can get help if I am in distress, etc. KNOWLEDGE!
• over 2 years ago
While I would like to have my loved ones nearby, I would not want to be a burden on them. While staying at home would be my preference, it is not always practical, and I would hope I'd be able to recognize that, and take into consideration the effect on my family. Therefore, HONEST communication among family and medical personnel is essential to setting the direction for end of life.
• over 2 years ago
I would like to stay at home if it is convenient for my family. But, if it's too much work, I have to accept that I need to stay in a long-term care facility. If I'm at home, for the last week or 2, I hope to be in a hospice.
• over 2 years ago
Information, I would like to know what to expect and how to deal with it. I would like to know that I am not putting undue strain on my family. It would be important for me to spend time with them and not leave unfinished business for those left behind to deal with.
• over 2 years ago
I think who is with me (family and friends) and my physical comfort is the most important. If I can't be at home that is ok because I know being out of the home is sometimes best, for both the family and the patient. I would like to be comfortable and looking at (or being in) something to do with nature (ex. a garden outside a window or near water). Comfort care is what I am looking for.
• over 2 years ago
my ow death ...hhhmmmmm , loved ones close at hand, pets , the option to stay at home as long as was feasible for all concerned and then to go to hospice if that was decided. or to die at home.....with well controlled pain and symptoms
• over 2 years ago
Being able to make peace with those that I have not been at peace, to have a chance to say goodbye, surrounded by family and friends but having professionals who can complete my physical care needs so not to burden my family
• over 2 years ago
To have adequate care for my physical needs with as little pain as possible. To be kept comfortable. In a location close to family members where I can expect reasonable visitation. To be informed of the likely time I have until my death.
• over 2 years ago
Level of care must reflect the needs of the patient. Location of care must reflect the wishes of the patient as well as the capability of the caregiver, supporting the caregiver when and how necessary
• over 2 years ago
Being able to communicate with those I love..... being with family (blood and non-blood)..... being in a place of my choosing (which may change from what I would like now)..... living to the fullest extent that I am able to in comfort. Those important to me, know my wishes.
• over 2 years ago
In a familiar environment, surrounded by the people, animals and things I love. If at all possible, at home. If I have a disease and I am eligible for physician assisted dying, I would like to be in control of the time of my death.
• over 2 years ago
When I think about my death, less pain as much as possible. Still like to be in a nice and peaceful location where I can rest my head . I do not have a lot of relatives around me as most of them are overseas. Its is a private moment for me.
• over 2 years ago
Compassionate care, at home, with support from an end of life doula
• over 2 years ago
I hope to be able to stay home surrounded by those who love me. If that is not possible I would like to access a palliative ward or hospice where my physical needs are met so that I can be spiritually and emotionally free to enter into the new world at peace.
• over 2 years ago
It is important to me that my decisions are made known to my family for end of life arrangements. It is important that my family is prepared and will be supported through the process of my illness.
• over 2 years ago
Most important to me is that I have made preparations before my death, leaving as few decisions & arrangements as possible for my family to make.
It is the last, most loving thing I can do for them. I would prefer not to die alone in my apartment.
• over 2 years ago
I would like to think that I can die as I have lived.... with respect of my values, my person-hood, what is important to me, and as alert as possible...
I would like to die in familiar setting, with familiar people around me. I would like to do as much as I can for myself, be with my family and their support, however that might be defined by them, and also in the care of thoughtful and knowledgeable palliative care professionals