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.
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.
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...
- 8 films about Altzeimer's Disease
- Caring for your parents: PBS video
- Death, 63 yr. old dies at home (BBC video)
- Dementia: impact on the family