Palliative care access still lacking

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  1. Heather Cavanagh

    Thank you for a thoughtful, balanced article. This is unfortunately a topic no one in the general public talks about until they find themselves in it. We need to elevate interest and media attention as we will all die and it should be as ‘comfortable’ as possible.

    • sam plover

      So true Heather,
      The problem of not talking about it is that the affected persons, the ill patients have no energy to go public.
      Our systems are run by healthy people, the sick are at home, just being sick.
      There are also many illnesses that even though a patients death cannot be ‘foreseen’, desperately need palliative like services. They need more than an hour visit once per week.
      Many diseases have just as great suffering for longer than the requirements needed by patients as to meet the six month life expectancy.
      So why do we get palliative care? Because we are dying or because we are horribly uncomfortable?
      There are a lot of people that never see one bit of loving care before they die. And I think that is really the saddest thing.
      It is a good thing that it is not remembered, but still, it is well known that being sick and having nowhere to turn will only make you sicker.

  2. MdM

    Is no-one else a bit concerned that Canada has passed legislation allowing health caregivers to ‘hasten death’, while health legislation and policy across Canada is cutting, reducing and controlling Canadians’ access to active treatment.? By active treatment, I include pain management and pain medications, home care support, nursing home and of course , palliative and terminal care? Is no-one concerned that the lack of appropriate care actually causes suffering, which in turn, propels people toward assisted suicide? Apparently, Canadians have the ‘right to die’ but no corresponding rights to palliative care or any other type of clinical care when we become terminally ill.

    • Vanessa Milne

      I know this was a topic that came up a lot when MAID was first introduced – a legitimate concern for sure.

  3. Theresa Greer

    Hospice services across the province is heavily dependent upon the generosity of the community to support both the capital costs of building the actual facilities and then for up to 40% of the annual operating costs of both the residential programs and the ‘community’ hospice programs. There is much work to be done in the Province to determine what are the core hospice services and to insure that those who are palliative have access. This article is a good beginning conversation.

  4. Ursula davidson

    I do believe in my “right to die” when I get to that point in my life when there is no other alternative. In these cases, pain medication should be readily available and given more rather than less. I think it’s unacceptable that someone in their last hours or days should suffer at all– it’s just not humane. Unfortunately, the problems in our health care system is across every Province and each one is striving to make it better. Thank you to all the caring people who are striving to do so.

  5. Margaret

    I took a course studying the delivery of palliative care in different European countries. Canada is very far behind most countries there. Everyone should have access when they need it and service not limited by type of disease and not only in the last month of life. We have a very long way to go

  6. Ed Weiss

    (Disclaimer: I’m a family doctor who includes home visits to frail and dying patients as part of my practice. I’m also a provider of medical assistance in dying.)

    We certainly are a long way from how palliative care should be delivered in Canada. I fully agree that introducing palliative care at an earlier stage of disease progression (and not to mention for non-cancer diagnoses) is crucial. There are a few challenges that I often face day-to-day:

    -When someone is not obviously sick and/or dying, it can be conceptually difficult to accept the idea of planning for a future decline. Many patients with a non-cancer diagnosis (e.g. heart failure, COPD, cirrhosis, to name a few) don’t have a good sense of what their life expectancy might be, or what their disease trajectory might look like. (Of course, in many cases, neither do we, as physicians, given the unpredictability of some of these conditions.) I think part of this is a failure amongst doctors to be frank and educate patients about how potentially serious their medical conditions might be. It’s not an easy conversation to have, but it’s necessary.

    -The postal code lottery is alive and well. Here in Toronto, palliative care services are often limited by catchment areas, and what is available in one part of the city may not be available a few blocks away because of arbitrary boundaries imposed by funding agencies. For example, the Dorothy Ley Hospice in the west end of the city has an outstanding pilot program that aims to identify and support patients who are “pre-palliative,” and who might benefit from an early linkage to a hospice. But my patients who live out of their catchment area cannot participate. More consistency across administrative boundaries would be excellent.

    -Even when palliative care services are available in a patient’s home, there are times when there is a distinct lack of communication between home care providers and family physicians. A patient of mine may have nurses, physiotherapists, occupational therapists, and social workers assessing and providing services to them, but there’s often no routine communication with me. This is something that I hope will change with the transition out of the CCAC system (though I’m not overly optimistic.)

    On the bright side, palliative care has made significant inroads in medical education, and family doctors graduating now are expected to be able to provide end of life care to their patients. Whether or not they choose to is another matter.

    • sam plover

      Dear Ed,
      Thank you for commenting.
      I do think patients have a good sense of how sick they are. Obviously no one, not even a physician knows the exact date, time of death until it has happened.
      I don’t know of any person that enjoys being sick, nor pretends to be sicker than they are (except possibly some people with colds)
      When patients suffer from declining diseases, the patient is the one who knows best. Why in the world would we take it upon ourselves to decide the patients outcome when reported symptoms and QOL are very good indicators of how sick someone is.
      To not believe them is simply treating patients as infants, to make decisions for them is not humane.
      These diseases mentioned are very serious and it would not serve the patient well to just let them flounder in their discomfort. It is inhumane.

  7. Megan

    We also live in a death denying society; we choose to ignore things until it is too late. Whether it is the patient or their family, often hospice services (whether residential hospice or community visiting) are not investigated in time. We need doctors to broach the subject early on, changing the language they use so that people don’t see palliative care as “giving up,” rather as simply seeking the support they need. Hospices are not where people go to die; they are where people go to live out their final days. There is a distinct difference that we don’t seem to understand, and it is heartbreaking that so many miss out because they are unaware of the services available.

  8. Steve Renolds

    As stated elsewhere in this site, THIS is not an issue for folks with money. Money will purchase support. This issue is all about those who do not have the money to purchase the needed care and support. Until the majority of people wake up and elect politicians who will do the right thing in terms of health care and spending our money, this (and many other issues related to health and everything else) will continue as they are.

    So… either find a way of accumulating the necessary funds to be able to pay for things, OR be kind and hope that your kindness will be returned when you are in need.

  9. Jane Sinclair

    I kept this article to re-read… I am a retired nurse, having “worked” for 52 yrs in active nursing.. I worked with many palliative pts., in hospital and in the community.. and through CCAC.. As you will note.. I am an “old-fashioned” nurse (?!).. who believes in good hands-on care.. One frustration.. in later yrs of my nursing practice.. was the “new version” of nursing.. described to me by more than one.. generic Univ ns grad.. It is now a more “computer” practice, and research research research.. but fewer willing to do the actual nursing care, I found.. There are many divisions.. providing care now.. PSW, RPN, no more RN.. just BScN.. often with inadequate “respect” for “lower” divisions of care providers.. I’ve witnessed this.. And, with CCAC- care co-ordinators.. some with NO/limited hands-on experience.. esp. in palliative care.. directing care provided by the nursing agencies.. To say, it is now 2018.. and there is, as one response claims, an adequate data infrastructure.. lets now concentrate on providing adequate actual palliative care.. Too many people in offices.. and not enough at the bedside.. my humble opinion…

    • Linda

      My husband was in the hospital fo 29 days, We had 2 bad nurses , I had to straighten them out, Should never had happened, they just don’t care, now my husband is palitive, And has 6 months , i have been taking care of him since 2011, long road, ,Hospice is coming here friday to evaluate him, This is all new to us

  10. Wilfred Kelly

    Medical assisted death was approved by the Supreme Court provided all Canadians have access to palliative care in the closing years of life. All Canadians do not have this access. The most vulnerable 50% of Canadians will, as time progresses be the Lion’s share of assistance in death, it simply will be a more attractive choice. We are on a slippery slope. Kindness to kill cost way less then kindness to comfort. It’s in the budget.

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