Tag Archives: death and dying

Yea or Nay on Medical Aid in Dying?

Hawaii has become the latest state to enable medical aid-in-dying, and  public opinion has been shifting more in favor of it in the past couple of years.  It’s still an enormously controversial subject and too often advocates on both the “pro” and “con” side shed more heat than light on it.  I wrote this blog piece for http://sixtyandme.com in hopes of providing a little light.

Spoiler alert: I am opposed to medical aid-in-dying. Not for religious reasons, or because it violates the medical principle of “do no harm” or even because of fear of the “slippery slope” that would harm the most vulnerable among us.

In short, it seems to me that this evolution is more of a striking and continuing indication of the sorry state of end-of-life care currently, than it is a rational health care solution for those suffering terminal illnesses.

You can read the piece here: http://sixtyandme.com/exploring-both-sides-of-the-physician-aided-dying-conversation/

An Early Valentine’s Day Gift! A Free Book!

Here’s my early Valentine’s Day gift to you! It’s a chance to win a FREE Kindle version of my book, “Last Comforts: Notes from the Forefront of Late Life Care.”

Enter before Feb. 14 and you could be among the 20 winners of this award-winning book about educating ourselves and our loved ones about the best possible care in our later years, to avoid medical crises down the road. It’s a book with a lot of heart and a lot of practical guidance, too!

The giveaway will only last from Feb. 1 to Feb. 14, so enter now. And if you already have the book, be sure to tell your friends!

Here’s the link: https://www.goodreads.com/giveaway/show/276947-last-comforts-notes-from-the-forefront-of-late-life-care

 

Food, Glorious Food — Until It Isn’t Needed

We’re in the midst of holiday season, and for many of us that means family events, gatherings with our friends and other celebrations. And of course it means lots of eating. An abundance of goodies that are sweet, savory and everything in between. That’s no surprise, considering that in our culture, food is one of our basic expressions of love. It’s one way we nurture each other and connect with each other. It’s comfort.  A chef I met last year summed it up so clearly. “All I ever wanted to do,” he said, “was to feed people and make them happy.”

For those who are nearing the ends of their lives, though, food not only becomes less and less of a pleasure but also less and less necessary. That’s a hard concept to wrap your head around and even harder to confront when you see this happening to someone you love. A person’s lack of appetite is a powerful and unwelcome symbol of decline, and a harbinger of the loss we will soon experience. If only Mom or Dad would eat, you might think, they could get some strength back, feel better and slow the progression of illness.

As a result, there is a giant misconception that the dying suffer terribly if they don’t eat or drink anything; that they will die of starvation or dehydration. Further, that people responsible for their care are cruel and inhumane if they do not feed the ill, or at least give them fluids. But when a person who is terminally ill stops eating, he or she cannot process food and fluids. Forcing the person to eat does not help that person to live longer, feel better, feel stronger, or be able to do more.

When a man I’d been visiting for a several weeks in a nursing home recently reached that point, his sister poignantly asked me, “Can’t we get them [the nursing home] to give him a feeding tube?” Of course she didn’t want to see her brother steadily becoming weaker and weaker. Of course she didn’t want to lose him. She believed that he would get some strength back if only he would eat more. But it wasn’t lack of nutrition that was causing his decline; it was the cancer.

Her brother’s advance care directive, in fact, called for no artificial nutrition. The fact is, at that point artificial nutrition and/or hydration makes people feel bloated, nauseated, and/or develop diarrhea. It does not relieve suffering. Here’s what the American Academy of Hospice and Palliative Medicine has to say: “For patients near the end of life, artificial nutrition and hydration is unlikely to prolong life and can potentially lead to medical complications and increase suffering.”

It’s better, the experts say, 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 light, soothing massage. Playing favorite music. Or just sitting quietly, holding hands, offering your presence and your love.

Addressing Nutrition in Advance Directives

It’s important to address the issue of nutrition in your advance care directive. It may not be enough just to say “yes” or “no” to artificial nutrition and hydration, though. Recently I came across a useful document about this, published by End of Life Washington. It addresses the issue of feeding-by-hand, which could be an issue in long-term care facilities caring for people with advanced illness and/or dementia. (And it certainly underscores the importance of documenting the advance care goals and preferences of people with dementia early in their diagnosis.) You can read the full document here.

At the heart of it, the document 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.”

This document does not replace your advance care directive, but it is a supplement to it. This organization also has a detailed general advance care directive as well as an advance care directive for those with Alzheimer’s or other forms of dementia available on its website. They’re worth a look.

In the meantime, I wish you a bountiful and joyful holiday season, filled with precious times with everyone you love.

 

Magical Thinking in End-of-Life Issues

Recently I had a chance to see how the human heart and spirit can overrule the rational mind, even in hypothetical circumstances. At a local educational event  on palliative and hospice care, a woman in her 80s in the audience was attentive and engaged during the presentation. During the discussion that followed the presentation, she talked about how she wanted to look into becoming an organ donor.

But then, she asked the experts if her heart stopped and if she had decided to opt for CPR but it didn’t work, “Can’t there be a miracle?” In other words, before being pronounced dead, couldn’t there be some other way to revive her and enable her to live on? And would she be pronounced dead before her miracle kicked in?

We all want miracles, do we not? We want to have hope when all evidence points to the contrary. That’s why I found her question so poignant, so human. This woman, who had at first seemed to be a realist regarding the question of mortality – accepting it on an intellectual level – was at the same time wandering in the realm of magical thinking.

We’re all susceptible, truth be told. But there are a few things to keep in mind to avoid wandering into this realm ourselves.

I blogged about it for the website sixtyandme.com, and you can read it here:

Wishing you all a wonderful start to summer, this coming weekend!