[Larry was a hospice patient with end-stage dementia. His wife Kathy cared for him at home.]
I met Larry over two and a half years ago when VNA hospice sent me to his home. Unfortunately, we never actually met each other. His dementia was so advanced that he never seemed to recognize anyone. He passed away two days ago and his funeral was today.
Last Saturday, I went to Larry’s home to sit with him while Kathy went to Mass at 4pm. He looked very different today from the last time I saw him. He has been bedridden since Kathy noticed that bed sores had appeared on his heels.
Last Saturday was different, because Larry had not gotten out of bed and was not eating or drinking.
When I arrived, Kathy greeted me at the door and said Larry was resting comfortably and was not in pain. She asked if I wanted a cup of tea. I said I would love a cup later and she said, lets go up to see Larry.
He lay in a hospital bed in a guest room upstairs. He was propped up and his head was laying back. He was asleep. Kathy said that it was becoming difficult to feed him because he rarely opened his eyes. His brain was shutting down and we both knew it.
Over the next hour I sat with Larry while Kathy was at church. I sat across from him as I had so many times when he was in his wheelchair downstairs. He was almost always in the kitchen.
Today, his eyes were closed and his mouth was wide open. As he breathed, the sheets would rise and fall. The movement was barely perceptible. Several times his breathing began to slow and I wondered if he would start again.
I was seeing him for the last time. The next time was today at the funeral home. He died two days after I sat with him.
Today at the funeral I sat alone and remembered all of the great stories I’d heard about his life.
[The story that touched me most profoundly was about a collection of memories in a box.
“They were concerned that he could choke, that any food he managed to get down was likely to make him feel worse, not better, because that’s how it goes when the body starts to permanently shut down. And they were right.”
1) People often “go down hill” when they no longer have the direct care of family and friends. The cause is often related to eating and drinking. If you’re feeding someone you can observe if they chew and swallow. This sounds mundane, but patients at the end of life, particularly those with advance dementia, lose the ability to swallow. They can choke if not observed closely. Feeding is an art. (See Shadow Feeding.)
2) People who no longer want to live and cannot be aided by a physician to legally end their lives, can hasten their death by choosing not to eat or drink. I can’t imagine the pain of ending your life that way, but it is not unusual.
There’s an interesting Editorial in the Sunday New York Times today that again raises the question of patient choice. Should terminally ill patients have the right to decide when to end their lives?
It’s no surprise that the medical community is split over this issue as are most Americans. My goal is to prompt a discussion, and ask you to consider the issue and decide for yourself. You may be having this conversation with your parents sooner than you think.
Please read Offering a Choice to the Terminally Ill.
When I became a hospice volunteer I was told that no one should die in pain or alone. I had a personal connection to the end of life because held my father’s hand as he took his last breath. He was not conscious, but I was sure he was not in pain. I believe in the mission of hospice, but I realized that hospice is no panacea.
A few years ago this state considered a referendum on physician-assisted suicide. I supported the referendum and campaigned for it’s passage. I even stood on a street corner with a sign to express my support. On those Saturday mornings I spoke to a lot of people as they walked by and I was disappointed that most didn’t want to think about the end of life. You’re entitled to your opinion about death with dignity, but don’t be oblivious to an issues that will certainly affect us and everyone we know and love.
Ira Byock has written thoughtful piece in the New York Times today that I hope you will read. He is a palliative care physician and the director of the Institute for Human Caring of Providence Health and Services.
Please read Dying Shouldn’t Be So Brutal.
Illustration by Angie Wang
To me this makes all the sense in the world. People who are suffering from life-threatening illnesses should be given all of the information needed to make a decision about how to spend their last days.
Currently, your physician cannot bill Medicare for time they spend informing you of your options. Most of us cannot appreciate that this life is fragile and will come to an end. You or a loved one may want to plan for that end with a health care proxy. You should make your wishes clear to your doctor and your family, but you may need advice and your physician should be able to give it to you.
Here’s a great article by JAMES C. SALWITZ, MD that sums up why hospice is important from a financial perspective.
“Infinite dollars, scientific innovation, health insurance reform, and educating more doctors, will not fix our dysfunctional “system.” Only a prime focus on health, not disease, can do that. Perhaps the hospice model of care offers lessons toward a solution. No, I do not mean “give up” and put everyone on terminal care, but rather we can learn from the basic structure and concepts of palliative and end-of-life care.”
“…hospice believes that rational, realistic and optimal choice is often low tech, low cost and high benefit. Quality of care can be achieved by optimizing health, responsible nutrition, being in the home instead of a medical institution, a positive social environment, limiting depression, controlling disabling symptoms and avoiding invasive complex technology. The palliative care approach to support and health can extend life and quality at greatly reduced cost.”
I stumbled on this article and was very impressed with how the Gen Y-ers and millennials have begun projecting their own sensibilities onto rituals and discussions surrounding death. http://www.nytimes.com/2014/03/23/fashion/an-online-generation-redefines-mourning.html?hpw&rref=fashion&_r=0
[Larry is a hospice patient with end-stage dementia. His wife Kathy cares for him at home.]
When I visited with Kathy and Larry yesterday, he was sitting in their bright, sunny living room. The snow banks were melting outside and Larry was in his wheelchair with his back to the window. Light streaming in the windows reflected on the mirror over the fireplace.
As Kathy and I talked at length about her family, she got progressively excited relating new stories and old memories. As her voice grew elevated, Larry abruptly said “shut up now.”
I was startled, but Kathy told me that if anyone speaks in a loud tone of voice, he says “shut up.”
[OK. Now to recap for those who are new to this blog.]
Larry has not spoken to anyone for several years. He spends his days talking to himself in nonsensical phrases. He doesn’t seem to understand what is said to him and he typically makes no response.
When he does respond, I can’t help but wonder what he really understands.
[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]
When I visited Larry on the day after Valentine’s Day, I found him at the kitchen table as usual. I was there to sit with him while Kathy went to church. Since there was a snow storm coming, she wanted to go to Mass on Saturday evening instead of Sunday morning.
As almost every week since I’ve known Larry, he was sitting in his wheelchair at the head of the table. The center of the table typically has a bowl of fruit and wooden holder containing paper napkins. On Saturday there was also a plate of cupcakes with chocolate icing and a chocolate heart in red foil on top of each. There were also two cards.
The cards were clearly older with yellowing pages and ragged edges.
Kathy told me that she and Larry decided that they loved the Valentine’s cards they had given each other so much, why buy new ones. Each year since 1998 they exchanged the same cards. When Larry’s Alzheimer’s disease advanced to the point that he didn’t know her anymore, she still brought out the cards each year.
The cover of one card has two bears sitting on a log holding hands (paws) and kissing. I was surprised to realize that it was a musical card playing an instrumental version of “Love me Tender” by Elvis.
I don’t know what else to say.