“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.
[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]
When I visited Larry last weekend, Kathy left for church and so I sat with him while she was away. Not long after she left her daughter came down to check on him. She’s a single mother who lives upstairs with her only child. She told me a poignant story about the decline in Larry’s memory and how it affected her daughter.
The granddaughter is named Marie and she was born ten years ago after Larry had retired. I was told that he took great joy in holding Marie when she was very young. When he was holding her he seemed to take great comfort in the present. He would hold her for hours not worrying about what he needed to remember and cherishing the moments.
When Marie got older she would follow Larry as he worked in the yard. In his retirement, he spent much of his time planting and caring for flowers. He was always digging in the soil adding new plants and dividing some to share.
As young children will, Marie would find an interesting rock and bring it to Larry. When she delivered the latest treasure she had discovered, Larry would hold it in his hands and study it as if it was a precious jewel. He would talk with Marie at length about what made it special and how much he valued her discovery. Then she would go back to her search only to find another stone and take that new find to him. She loved the attention and they spent hours together.
Years passed and Marie grew up at the same time Larry declined. They were always close, but she was busy with school and music and didn’t spend much time with him. Eventually Larry’s dementia took over and he no longer communicated with her or anyone. Over the first ten years of her life he became the man I see sitting in the wheelchair talking to himself.
I learned that about a year ago the hot water tank in the basement began to leak and some of the things stored near by were damaged. As Kathy and the family sorted through the water damaged items, someone discovered an old shoe box on a shelf. When opened they discovered a large number of small objects wrapped in white paper. To everyone’s surprise, each object was one of the small stones Marie had given to Larry when they worked in the yard. He had used the pages of his daily calendar to write an observation and then carefully wrap each stone to store away.
When Marie was told about the discovery, she was shocked. She was speechless and stared into the box for several minutes in silence. She couldn’t believe that Larry had so treasured the small gifts that he wanted to preserve them and their memories. He collected over fifty stones and preserved each one with the date and his thoughts at the time.
Most patients with Harry’s advanced stage of dementia live in nursing homes where their families visit on occasion. Once the patient’s memory is gone and they can no longer communicate or care for themselves, they decline very quickly. Larry’s situation is totally the opposite because of the way his family cares for him. The story speaks for itself.