Medical science has greatly enhanced the life span. This increased longevity means that you must carefully reflect on what how much treatment you want as you age. Research is revealing that living longer increases the chance of developing dementia, for which there is no cure. It is an illness that can strip you of your dignity, consume your family’s caretaking capacity, and exhaust your financial resources. Many elements of dementia care are not covered by Medicare.
The following three articles will help you understand the complexity of the dementia issue.
In 2015 Paula Span, a well-known journalist, described a man who adapted his Advanced Medical Directives to explicitly state that he did not want to be fed if he could no longer feed himself. Span’s article preceded by two years a troubling situation in Oregon that featured a woman in a nursing home with advanced dementia whom her husband claimed was being fed against her stated medical directives. When her husband filed suit against the nursing home, the court ruled that because she opened her mouth when a spoon was put up to it “she wanted to eat”. It was not viewed as a purely reflexive response.
On January 19, 2018, Span published another article describing the efforts to improve the clarity of dementia directives through the use of forms designating what you would want under mild, moderate, or advanced states of dementia. You can view, download and print the five page document which includes three forms addressing each level of dementia.
This directive is limited in two respects: (1) the choices of treatment are more limited and (2) the implications of choices are not addressed. For more detail, I refer you to the Chapters 3 and 4 in my e-book YOUR LIFE, YOUR DEATH, YOUR CHOICE to understand the implications of twelve choices for treatment. Chapter 5 provides information on the 3 levels of dementia with only one form to complete. You can view and compare my dementia directive, “Situation E” which includes 12 choices (including feeding) by clicking here.
We are a very long way from a solution to this issue. In the meantime, it is important to take the necessary steps of deciding how much treatment you want, having important conversations about your choices with your family, doctor, and health care proxy AND completing one of the forms to ensure that your choices are honored.
HERE ARE A FEW QUESTIONS FOR YOU:
HAVE YOU EXPERIENCED DEMENTIA WITH A RELATIVE? WHAT DID YOU SEE OR EXPERIENCE?
ARE YOU AWARE OF DEMENTIA AS SOMETHING THAT MIGHT BE INHERITED IN YOUR FAMILY?
HOW MUCH TREATMENT WOULD YOU WANT? DO YOU HAVE THE RESOURCES FOR THAT TREATMENT? HAVE YOU CONSIDERED WHETHER YOU WOULD TRY TO FIND OUT IF YOU HAD DEMENTIA BY DNA TESTING?
HAVE YOU COMPLETED ANY ADVANCED MEDICAL DIRECTIVES? IF NOT, WOULD YOU CONSIDER DOING IT AND INCLUDING A DEMENTIA FOCUSED DIRECTIVE/
HAVE YOU HAD CONVERSATIONS WITH THOSE IMPORTANT TO YOU ABOUT WHAT YOU WOULD WANT?
Paula Span is an incredible journalist who often offers observations which are cutting edge. In 2015 she wrote about the need for clear and detailed statements about your choices for end of life care if you are suffering from dementia. In particular the individual she was featuring had taken pains to detail that feeding and hydration should be terminated. He simply didn’t want his life to continue in a severely compromised state with little or no dignity left.
It was prescient. In August of 2017 an article was published (not by Span) which described how the State of Oregon had ordered the feeding of a woman with advanced dementia despite what her advanced directives said. The reasoning was that she had “not provided adequate detail” in her directives and because she opened her mouth when a spoon was brought to it, she “wanted to eat and to live”.
The husband (her proxy) filed suit against the nursing home and the court ruled against him. So she remains in a nursing home (at $85,000/ year) being fed by hand. Keep in mind that Oregon is the State with the longest and most progressive attitude towards death with dignity.
As a good adjunct to detailed instructions in the event that someone is develops dementia, it is also worthwhile to video tape the signing of the directives and to have the person state what their wishes are if they become unable to recognize or interact with others. You can do this with your smart phone but be sure to save it to a flash drive.
As the situation above illustrates, it may make no difference.
“This Was Not the Good Death We Were Promised.” NY Times Op Ed, January 6, 2018
This is a story about one hospice in one community at a particular point in time.
All Hospice organizations are different and have different cultures. While they ostensibly do the same thing; provide care for those at the end of their life, they have different cultures and go through all of the stresses and strains of any organization. For example, I recently learned of a situation where two parents went into the same Hospice within a year of each other and the first experience was very positive while the second was not. It is to the credit of the Hospice organization that they scheduled a meeting to learn how they had not met the expectations of the family and were determined to correct the problems.
One distinction that may be important to consider is whether the organization is a nonprofit entity. It is logical that a “for profit” entity has more of an eye on how to keep costs down. Click here to read the story.
Talk with your family about whether you want Hospice as a resource when your life is coming to an end. As friends who might have had a relative what their experience with Hospice was like. Did you know that Hospice patients generally live longer with less pain and discomfort than a similar group? Unfortunately, when many hear that someone has gone into Hospice they consider it a death sentence. It is not. It is a decision to live for as long as they can with the greatest humanity and comfort that can be provided. Too many families and patients wait too long to contact Hospice. HAVE A CONVERSATION ABOUT HOSPICE WHILE YOU ARE WELL AND LET YOUR FAMILY KNOW WHETHER YOU WOULD WANT HOSPICE.