Thursday, January 28, 2010

Dying in Dignity

This is a topic near and dear to my heart, being the title of my book.
I read a study, recently, downloading it from the publisher for a grand total of $9.71. It was a disappointing read, however, not in the quality of the study but in its findings.

The conclusion is that the 'new' end-of-life strategies, designed to provide dignity for palliative patients who wish to die at home, and to allow them the peace of passing in the comfort and security of their own homes, have been a failure. Their measure: keeping patients out of Emergency Rooms, has not worked.

With the infusion of new dollars why is it, then, that those we know are declared palliative end up in hospital emergency, or in a hospice in an institution, rather than in their own homes where family can give them attention and personal care at home?

I have some conclusions, since my mother died at home, and my father in long-term care.

Where are the barriers?
Family members panic, they are not prepared, nor educated and do not know what to expect. There is a lack of education in some who do not understand issues like Cheynes-Stokes breathing, or the mottling (cyanosis) that comes as a palliative patient's body shuts down.
    Quality of life and end-of-life care policies in Canada are clear. The Canadian Bill of Rights guarantees the dignity and worth of every human being. The Government of Canada (2000) in its policy statement said the key mechanisms for improving the care of the dying include:
    • Service delivery by interdisciplinary teams
    • Access to services in the most appropriate location
    • Availability of services when needed, whether for a few hours or around the clock
    • Availability of services before death is imminent
    • Services for a broad-based clientele, both with respect to cultural background and type of illness
    • Awareness and skill in pain and symptom management
    • Support for caregivers and family members

                Access to such support varies and is dependent upon identification by family health teams, oncologists, general practitioners, and health care providers. My mother chose to die in her own home, on her own terms. She was uncommunicative and uncooperative and fought bitterly any health care support or interventions, due to dementia and complications from her cancer and her treatments. This is not an isolated case. It was a horribly difficult time, and I have not yet fully recovered from advocating for both of my parents. We had a wonderful relationship up until that time, but something happened to our family dynamics when the prognosis of cancer was made, treatment ensued, and both of my parents became ill. When dementia sets in, one’s faculties begin to deteriorate. The caregiver, as much as the care recipient, needs to have emotional and physical support. They need information, they need to know the signs of impending death. They need comfort in order to provide comfort to the care recipient.

    I am still angry with the lack of information my generation insists upon. Primary Health Teams are going to have to get smarter. Too much information is not processed, but having the information there, including the PPS, ESAS, amongst other assessment tools. We want to be prepared, we want to know what to expect, and how to cope.

    Who are the people who end up dying in hospital?
    I would suggest that they are those who cannot cope, who do not know how to cope, who do not have information on how to cope. I would predict, too, that these are people without the financial means to get help at home: someone to depend on, or those for whom professional help and nursing care is infrequent. I believe it revolves around education, and socioeconomic levels. For those who are alone, living in poverty, caregivers cannot take time off work to provide care. We know that 25% of caregivers are adult children, mostly daughters (many daughters-in-law, too), who are profoundly impacted economically, financially, emotionally, socially, as they provide palliative care for a failing parents.

    This article seems to suggest the opposite of what is true. Especially in Canada. Things are different here.

    Families 'kept in the dark' as doctors make life-or-death decisions
    Times Online
    But maybe I am wrong.

    Education and more support is the key. In my mother's case we were entitled to 4 hours care a day the week she died. Not knowing how close she was to death meant that I kept hanging on and kept on working. If I had known, if the clues and the predictable decline was explained to me, I would have taken time off of work. 

    For more information: videos of note...

    1 comment:

    Anonymous said...

    Hugely understand this, because I see it frequently from the other end, and I know how frustrating it is.