Monday, September 17, 2018

End of Life care - the glass is half full

Ethicist and Oncologist Ezekiel Emanuel wrote an editorial in the July 17, 2018 edition of JAMA which is quoted below. He is commenting about this article: Site of Death, Place of Care, and Health Care Transitions Among US Medicare Beneficiaries, 2000-2015. (JAMA. 2018;320(3):264-271. doi:10.1001/jama.2018.8981)
Emanuel points out continuing how medical end-of-life care is continuing to evolve in the USA. More of us are dying outside the acute care hospital, but still too many of us are in the ICU or receiving chemotherapy in our last days. Hospice utilization continues to dramatically improve. 
Almost everyone has a story about end-of-life care gone bad. The available data reveal many reasons for frustration with how care for dying patients is currently delivered. But rather than see the glass as half empty, the historical perspective offered by Teno and colleagues in this issue of JAMAis a reminder of how far the US health care system has come on end-of-life care. This study suggests 4 important messages about the status of end-of-life care.
Improvements in End-of-Life Care
First, the glass really is half full. Regarding site of death, about half of all patients died in the hospital during the 1980s.2 During the 1990s, the rate declined such that by 2000 only 32.6% of Medicare beneficiaries died in the hospital. The decline continued so that, as Teno et al1 report, by 2015 19.8% of deaths among Medicare beneficiaries occurred in the hospital. Concomitantly, hospice use has increased. In 1980, hospice use was almost zero. Hospice use was at 21.6% by 2000 and by 2015 more than 50% of Medicare decedents received hospice care.
Simultaneously, it is important to acknowledge that the glass is not full. Almost two-thirds of all dying Medicare patients are hospitalized during the last 90 days of life—a proportion that is higher than in 2000. Even more discouraging, admissions to the intensive care unit (ICU) during the last 30 days of life increased starting in 2000 until 2015. Today, nearly one-third of patients receive care in the ICU during the last 30 days of life. Similarly, among patients with cancer, about 75% are hospitalized during the last 6 months of life, more than 40% are admitted to the ICU, and nearly 40% are still receiving chemotherapy.3 Even during the last 30 days of life, when death for a patient with cancer is not just predictable but inexorable, more than 50% are hospitalized, more than 25% are admitted to the ICU, and 10% receive chemotherapy.
Thus, even though significant improvements have been made in end-of-life care over the last 35 years, many problems still need attention and progress.

Sunday, July 29, 2018

Saying “Turn it off” after a pacemaker or implanted defibrillator is in place

Ed note: With technology it’s often easier to say “yes” rather than “no” – or worse, saying “stop” after you said “yes.” As an ethics committee consultant, I was asked to see a dying patient on hospice who wanted his pacemaker turned off. His cardiologist refused saying, “I can’t be involved in killing people.” But the ethics committee felt that the patient had a right to refuse further treatment with this implanted device. Eventually, the manufacturer helped supervise our staff in turning the pacemaker off after considerable turmoil about patient autonomy. Another issue is the implantable defibrillator – essentially a built in AED to shock your heart when a lethal arrhythmia occurs. The following article shows how hard it can be for a doctor to deal with the patient who wants “everything done” even if it may give a more uncomfortable death. 
From the NYT: “Like most patients, mine wanted to live as long as possible. So when I brought up the option of a small implantable defibrillator for his failing heart, he immediately said yes. The device would be inserted in his chest to monitor his heartbeat and apply an electrical shock if the rhythm turned into something dangerous. It was like the paddles in the emergency room, I told him, but it would always be inside him.
In truth I wasn’t sure if a defibrillator was really such a good idea. My patient was near the end of his life. He might live longer than a year, but certainly no more than five. Patients with heart failure mostly die in one of two ways: either from a sudden, “lights-out” arrhythmia that stops the heart, or from insidious pump failure, in which the heart increasingly fails to meet the metabolic demands of the body. The former, which the defibrillator would help prevent, is quick and relatively painless. The latter, which the defibrillator would make more likely, is protracted and physically agonizing.
When the time came, wouldn’t it be better for my patient to die suddenly than to struggle for breath as congestive heart failure filled his lungs with fluid?

Wednesday, May 2, 2018

Advance Directive's for Dementia

One of the greatest fears many have is progressive dementia. The common advance directives including the POLST form don't effectively address these fears. A few years ago, End of Life Washington developed a fairly complicated Alzheimer's Disease and Dementia Mental Health Advance Directive. Including the instructions, this 23 page document is a somewhat daunting legally drafted document.

More recently an attempt has been made to have a more simplified document. Dr. Barak Gastner from the University of Washington has published  an Advance Directive for DementiaThis simplified 6 page document with instructions breaks down care decisions for mild, moderate or severe dementia.

In a more aggressive attempt, the question of fluid and nutrition is being addressed in New York State. This directive allows individuals, in advance, to ask that fluid and nutrition be withheld in advanced stages of dementia. This ADVANCE DIRECTIVE FOR RECEIVING ORAL FOODS AND FLUIDS IN THE EVENT OF DEMENTIA will no doubt be challenged in court cases. The Washington Post notes that even in states with death with dignity laws, withholding fluid and nutrition in dementia is not addressed. End of Life Choices New York has a press release explaining the rationale and drafting of the document.

As far as I know, there have been no published outcome studies in the utilization of these directives. Like all directives they have limitations: Will they be found? Will they be honored? Will aid workers be willing to deal with withholding fluid and nutrition in advance stages of dementia? How will the legal concerns be dealt with?

Saturday, April 14, 2018

The most important step to insure your end of life choices are honored is to choose your health care advocate. Someone who is empathetic, strong, trustworthy and engaged. In the last few weeks of our lives, more than half of us will be unable to participate in the discussions about our care. So if you are going to complete just one document, it should be your durable power of attorney for heath care.

Monday, March 26, 2018

Healing Grief - some steps to consider

A kind woman has forwarded me some very useful web sites on the subject of grief. This complex and often confounding emotion can take over our lives - even when it is the loss of a pet. I hope you find these useful. What is it like to go through the process of dying? How can we deal with the depression? How about children, pets or drug overdoses?

Friday, September 1, 2017

Why are African-Americans not completing advance directives?

First a disclaimer. As a Caucasian, I have only personal anecdotal impressions from the African-American patients I have cared for. To me their approaches to end of life decisions were not uniform by any means, but there was clearly often more initial trust in their Pastor than in a white male doctor. Yet, once I gained trust I felt a real bond. I loved the caring and support that their community provided. I've been on a constant learning curve over time and still have much to learn about cross cultural medical care.

In the end-of-life planning sessions I've given over the years, most of the attendees are white with only a few minorities on occasion. The reasons are complex and historical.

African-American professionals are beginning to try to address the under-utilization of Hospice, Palliative Care and the POLST form. It should be no surprise that there is often distrust of the predominantly white medical establishment - the tragedy of the Tuskegee Syphilis experiment and segregated wards are in recent memory.

PBS has a useful video essay below discussing the problems and some attempts to improve trust and communication. We unfortunately still have echoes of racism and discrimination. Trust will only come over time with positive leadership echoing the values of Martin Luther King, Jr.

Monday, July 10, 2017

"Your Life Your Choices"

Here is a video of a program I’ve been involved with for the past 10 years giving presentations in a variety of venues. We all have the rights to make end of life choices and to have them honored. Dr. Robert Penfeld at Kaiser Permanente is carrying out research concerning the choices of people who are becoming cognitively impaired. Kaiser and Virginia Mason both offer classes, “Your Life Your Choices.” Check it out if your advance directives might need updating.

Wednesday, June 21, 2017

Surprising improvements in end-of-life care

Most folks wish to pass from this life in a home-like environment surrounded by loved ones. But in the past, most of us were whisked off to the hospital. Hospice care has had a huge impact by improving end of life care and honoring our wishes. This improvement is now showing up in population studies of terminally ill cancer patients.
In a recent study of end-of-life care around the world, "the U.S. had what would be considered positive rankings in several areas, refuting the widely held perception that end-of-life care in the U.S. is among the worst in the world. Only 22% of U.S. patients died in a hospital as compared to 51% of patients in Belgium and 52% of patients in Canada – ¾ the countries at the other end of the spectrum. Hospital stays for U.S. patients averaged 10 days in the last six months of life, as compared to 28 in Belgium and 25 in Norway – ¾ the countries with the highest average number of hospital days.

Thursday, April 20, 2017

Ralph Waldo Emmerson on aging and the boundary at the end

From the Poetry Foundation: "Ralph Waldo Emerson was a pioneering figure of what is now called “multiculturalism” who expanded the Eastern horizons of generations of American readers and writers, and he persuasively demonstrated how classical Indian, Chinese, and Persian works could be used as a means to bring the inquiring self into a fresh appreciation of its own profound powers."

Initially a Unitarian minister, Emerson eventually resigned saying he no longer believed in the divinity of Jesus. However, he did have a strong sense of a connection between the natural and spiritual world and was representative of the Transcendentalists. In his book, Representative Men, the Christian author Swedenborg was presented as his Mystic.

Emmerson's poem below appears to be his awareness of aging and the boundaries of life. he urges us to "Economize the failing river, Not the less revere the Giver." So I suspect he had a strong sense of a Divinity. He seems not depressed but upbeat by ending the poem with " The port, well worth the cruise, is near, And every wave is charmed.” 

by Ralph Waldo Emerson

It is time to be old, 
To take in sail:— 
The god of bounds, 
Who sets to seas a shore, 
Came to me in his fatal rounds, 
And said: “No more! 
No farther shoot 
Thy broad ambitious branches, and thy root. 
Fancy departs: no more invent; 
Contract thy firmament 
To compass of a tent. 
There’s not enough for this and that, 
Make thy option which of two; 
Economize the failing river, 
Not the less revere the Giver, 
Leave the many and hold the few. 
Timely wise accept the terms, 
Soften the fall with wary foot; 
A little while 
Still plan and smile, 
And,—fault of novel germs,— 
Mature the unfallen fruit. 
Curse, if thou wilt, thy sires, 
Bad husbands of their fires, 
Who, when they gave thee breath, 
Failed to bequeath 
The needful sinew stark as once, 
The Baresark marrow to thy bones, 
But left a legacy of ebbing veins, 
Inconstant heat and nerveless reins,— 
Amid the Muses, left thee deaf and dumb, 
Amid the gladiators, halt and numb.” 

As the bird trims her to the gale, 
I trim myself to the storm of time, 
I man the rudder, reef the sail, 
Obey the voice at eve obeyed at prime: 
“Lowly faithful, banish fear, 
Right onward drive unharmed; 
The port, well worth the cruise, is near, 
And every wave is charmed.” 

Tuesday, April 11, 2017

Wrongful life resulting from unwanted CPR and other heroics

Paula Span in the NYT has an interesting and challenging essay about unwanted CPR. Others have also commented on this issue. There are legal, medical, and moral issues involved. In the CCRC when I live, we are more aware of this issue than in many venues. Storing our advance directives and POLST forms (if completed) in a hanging file under the kitchen sink at least gives a helpful head-start for medical responders. Some residents have acquired DNR bracelets or medallions, a more direct signal to try to prevent bystanders from initiating CPR. Others, of course, would like all measures including CPR to keep them going.
Society's general default is "to do everything to save a life" then clarify and ask questions. But many argue that their right to die peacefully is violated by unwanted CPR heroics. There's even an attempt in Maine to legalize the use of DNR tattoos.  The moral of the story for all of us - think hospice not hospital at the end; have a strong personal advocate; and consider a DNR bracelet or medallion when you have a POLST form.

Monday, March 27, 2017

An Exit Guide on a mission

The other day, I had a conversation with a woman who was about to embark on a visit in rural Washington to be an Exit Guide. This term was unfamiliar to me, even having read Derek Humphrey's book, The Final Exit, a number of years ago. Humphrey was a founder of The Hemlock Society. The Society's name disappeared when it merged and became the more mainstream non-profit, Compassion and Choices.

Apparently some were unhappy with this and decided to continue the efforts of Humphrey. I must admit I felt a bit queasy when reading chapters in The Final Exit which explain how to tie a bag around your neck after ingesting medications, and how "to go together" with your loved one.

The Exit Guide I met is a retired physician though she said this wasn't necessary. She had joined and been trained by the Final Exit Network to be present with the person wishing to end their life. From her, I learned that pure nitrogen (N2) works well and the individual passes out without struggling in about 30 seconds and is soon dead from lack of oxygen. There are head-bag kits and videos on line for instruction and purchase. The individual she was visiting had some degree of dementia and lived in Washington State (where a death with dignity law exists) and this individual apparently did not qualify for physician assisted death.

I have so many questions. How much "assistance/instruction" can the Exit Guide give without being held legally liable? Do they remove the plastic bag and equipment before reporting the death, thus making it very hard to determine it was a suicide? How careful is the vetting? What degree of dementia is acceptable with their criteria? Washington State law says you have to be considered terminal within 6 months. What guidelines do the Exit Guides follow?

In addition to individual cases, some states are now looking to use nitrogen as the favored means for executions. There is a great deal of discussion about what's going on in Oklahoma.

For myself, I don't think I could become an Exit Guide. Could you? It's a question of a bright line between supporting an individual's autonomy and protecting their rights when mentally incompetent or not terminal. Making "how to" kits for head-bags and nitrogen, still makes me queasy.

Sunday, March 26, 2017

Please forgive me. I forgive you. Thank you. I love you.

Dr. Ira Byock recommends the use of these short sentences when stymied on how to talk to the dying. His wise comments come from his many years in Hospice and palliative care. You can listen to his comments here.

Friday, March 17, 2017

"Is Death in Trouble" - from the Hastings Center

Daniel Callahan wonders if death is in trouble. Have we pushed death back so far with the advances in medicine that we no longer die of old age? It's an interesting thought. Death may be intellectually inevitable but it's always touted as a "battle" and a "defeat." We expend billions looking to "wipe out" a condition only to have another take its place. I suppose what we're trying to do is flatten the aging curve so that there's an unexpected precipitous drop at the end rather than the dwindles. Heart attacks used to take us quickly, but now sudden death from a heart attack is in dramatic decline with cholesterol and blood pressure control. The unfortunate pervasive drug ads make us think that, yes, science will continue to solve that next problem for us, then the next. Really?

I wander into old age with a sense of unease. What's waiting for me? A fall with a broken hip? A lurking pancreatic cancer? A stroke? Or, God forbid, Alzheimer's. This is where a type of beneficent denial can help. Know the inevitable but get on with fun living - yes, a day at a time. Compartmentalize death. Expect loss, but move on. All easy to say, yet I'll keep trying as I close in to that point where the actuaries say I'm over the top. And I need to admit, it's not in my control.