Guest article provided by: Ellen Rand
It’s tough enough, under the best of circumstances, to talk to parents, spouses, siblings or close friends about how they might want to be treated if they were gravely ill and couldn’t speak for themselves. And it can certainly be awkward to ask if they have an advance directive, in writing, that would be the “roadmap” in case of serious illness, for their health care proxy.
But for loved ones with dementia, it is even more critical to have this conversation as soon as possible after they have been diagnosed. Why? As caregivers know only too well, dementia progresses to the point where ultimately those afflicted may not be able to think clearly, reason well or speak. They become increasingly dependent on others for their care. So, to honor these loved ones, to support them in the way they’d want to care for themselves and to make sure that medical professionals understand the best way to respect what matters to them, it is vital to ask the questions regarding future care when loved ones are still able to articulate their answers.
How do you even begin to discuss these life-and-death issues? Especially if loved ones are anxious about their health and their future, or resistant to the idea that anything is wrong at all? Before trying to talk about the pros and cons of specifics of what I’d call “the Big Three” — CPR, mechanical ventilation and feeding tubes – it’s important to talk about values first. One great source of advice for this is the Conversation Project (https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-StarterKit-Alzheimers-English.pdf), which offers a “starter kit” for those caring for people with dementia, at various stages.
The starter kit stresses the importance of beginning with exploring what matters to loved ones, what they fear, what kind of setting they envision if they were at the end of life, how involved they want to be in their medical care and who they’d like to have around them. It also emphasizes the importance of keeping the talk simple. Its questions are clear and straightforward. Finally, it stresses how important it is that you convey that this process is an act of love and that you will be there to support your loved one, no matter what.
Understanding loved ones’ values provides the framework for future decisions as dementia progresses. Advance directives, and health care proxies (those who will be responsible for speaking for loved ones) should reflect these values.
The “Big Three” in Advance Directives: Some Points to Consider
Cardiopulmonary resuscitation (CPR): Most of us have a general idea about how this works, probably from watching heroic and often extremely successful CPR episodes on our favorite medical TV shows. The fact is, the old, the frail and those already hospitalized with advancing serious illness, do very poorly with CPR. Broken ribs and worsened mental function are common; only a small percentage are ultimately discharged from the hospital.
Mechanical intubation (ventilation): Similarly, the old, the frail and those suffering from advanced serious illness also do poorly with mechanical ventilation. Dr. Ken Ouchi of Brigham and Women’s Hospital in Boston did a study of 35,000 intubations of adults over age 65 from 262 hospitals between 2008 and 2015 and found that for 80 to 84-year-olds, about one-fifth survive and return home. One third of the study group die in the hospital despite intubation. And, bear in mind that after intubation, patients will be in intensive care, most remaining sedated, unable to speak.
Covid-19 has made the ventilation question more complex, of course. On the one hand, caregivers cannot be with their loved ones to provide the comfort of their presence in person, which is difficult for all, particularly at the end of life. On the other hand, there have been instances where people have been on ventilators for many weeks and have survived (though often with physical and mental challenges ahead).
Artificial nutrition (feeding tubes): Sadly, people in the final stages of dementia may not remember how to eat, or be able to chew and swallow. Artificial nutrition is one solution to this issue, but it is not without its own problems According to the American Academy of Hospice and Palliative Medicine, for patients near the end of life, artificial nutrition and hydration is unlikely to prolong life and can potentially lead to medical complications and increased suffering. How? For starters, it makes people feel bloated, nauseated, and/or develop diarrhea.
Experts say it’s better to offer a little food or something to drink, and if your loved one wants it, even a minimal amount, fine. If not, don’t force it. There are other ways to continue to nourish your loved one, if food and fluids are no longer an option.
A useful template of an advance directive for people with dementia, published by End of Life Washington, addresses the feeding-by-hand issue. It states, “If I accept food and drink (comfort feeding) when they’re offered to me, I want them. I request that oral food and fluids be stopped if, because of dementia, any of the following conditions occur:
- I appear to be indifferent to being fed.
- I no longer appear to desire to eat or drink.
- I do not willingly open my mouth
- I turn my head away or try to avoid being fed or given fluids in any other way.
- I spit out food or fluids.
- I begin a pattern of coughing, gagging or choking on or aspirating (inhaling) food or fluids.
- The negative medical consequences of symptoms of continued feeding and drinking, as determined by a qualified medical provider, outweigh the benefits.”
No doubt this is all a lot of food for thought (pardon the pun) for caregivers and loved ones alike. But it’s the hard work of discussing and documenting loved ones’ values and wishes that will be the foundation for the compassionate and appropriate care that loved ones deserve later on in the course of illness.
Ellen Rand is author of “Last Comforts: Notes from the Forefront of Late Life Care.” She blogs at www.lastcomforts.com.
Picture credit to Pixabay