Longevity and dementia often go together – dementia or episodes of incapacity can be seen in some respects as the side effects of longevity. A longer life expectancy doesn’t usually mean that it will be the quality of life that a person enjoyed – mobility, autonomy, social engagement, in the early years of retirement age.
In my practice I sometimes meet with a client who is suffering some cognitive decline. Sometimes the type of brain disease or form of dementia can be narrowed down and other times this is more difficult. What is vitally important for these persons is to make sure that they have advance medical directives- in the form of a health care power of attorney as well as a living will.
I should warn you that some of this post is based on a cautionary tale. This evidenced by a recent Reuters article documenting a surge in ventilator use for nursing home residents with dementia. The study which is the subject of the article documents the number of nursing home residents with advanced dementia – mostly women – who needed to be hospitalized and were placed on mechanical ventilators. The use of ventilators for such hospital patients, however, did not lead to a better survival rate. The article is instructive in noting that this is a recent and troubling development:
In 2013, among every 1,000 nursing home residents with dementia who needed to be hospitalized for some reason, 78 were hooked up to mechanical ventilators, compared to just 39 out of 1,000 in 2000, the study found. Despite this surge, the mortality rate for these patients with mechanical ventilation remained constant at more than 80 percent.
Why is this happening? The study makes several suggestions, but a common sense answer to an important part of the question of how these patients are “ending up” with a hospital stay that includes being hooked up to a ventilator is somewhat obvious to me: these folks have not executed any health care powers of attorney or a living will. But sadly, what might otherwise be life-prolonging intervention for many patients does not have the same effect for these elder women with advanced dementia.
One explanation of what happens when a patient has not executed a medical POA or a living will has to do with what types of services are available to these patients in the hospital setting. The article quoted Dr. Gary Winzelberg as observing that “as long as it’s easier to access an intensive care unit bed [in a hospital] than comprehensive hospice and palliative care services in nursing homes, the trend of increasing use of mechanical ventilation for these individuals is likely to continue.”
Our health care system is not exactly “dementia friendly” when it comes to how it copes with the diminished capacity of a patient with advanced dementia who is unable to give informed consent and otherwise meaningfully participate in their health care decisions. This is one of the reasons it is vitally important for all adults to have “the conversation” with a loved one they trust. That conversation should ideally lead to the execution of advance medical directives – the kinds of documents that allow a person’s wishes to be upheld.
What seems theoretical and remote to so many people – is vitally important in the event the person with advanced dementia (or some other cognitively incapacitating disease or condition) wants to maintain some self-determination and the person’s family members wish to support the person’s decision to decline medical interventions like artificial nutrition and hydration and intubation (with a respirator) will become much more commonplace in the coming years as the number of people with dementia continues to grow.
So . . . how do we “work around” these difficult challenges?
– documents relating to decision-making guidance where a person is suffering from either a terminal condition or persistent vegetative state such that they are unable to made or communicate their own decisions.
The bottom line is we must be prepared and willing to help each other through this kind of difficult time in one’s life. The best way to do that is with just a bit of preparation in the form of a conversation and documented in a health care POA and a living will. Now is a great time to have the conversation and remember – it should be revisited at least annually!
© 2016 Barbara Cashman www.DenverElderLaw.org