Tuesday, April 16, 2019

The funeral as we know it is becoming a relic — just in time for a death boom

Ed note: Funerals are changing in ways that will bring culture shock and a shake of the head of some. How can we respectfully mix celebration, grief and honor the remains? How can we adapt to the idea that we now have funeral planners with all the bells and whistles? Where is God in this process some wonder? The article below introduces us to the brave new world of funerals on steroids.
From the Washington Post: Dayna West knows how to throw a fabulous memorial shindig. She hired Los Angeles celebration-of-life planner Alison Bossert — yes, those now exist — to create what West dubbed “Memorialpalooza” for her father, Howard, in 2016 a few months after his death.
“None of us is going to get out of this alive,” says Bossert, who helms Final Bow Productions. “We can’t control how or when we die, but we can say how we want to be remembered.”
And how Howard was remembered! There was a crowd of more than 300 on the Sony Pictures Studios. A hot-dog cart from the famed L.A. stand Pink’s. Gift bags, the hit being a baseball cap inscribed with “Life’s not fair, get over it” (a beloved Howardism). A constellation of speakers, with Jerry Seinfeld as the closer (Howard was his personal manager). And babka (a tribute to a favorite “Seinfeld” episode).
Death is a given, but not the time-honored rituals. An increasingly secular, nomadic and casual America is shredding the rules about how to commemorate death, and it’s not just among the wealthy and famous. Somber, embalmed-body funerals, with their $9,000 industry average price tag, are, for many families, a relic. Instead, end-of-life ceremonies are being personalized: golf-course cocktail send-offs, backyard potluck memorials, more Sinatra and Clapton, less “Ave Maria,” more Hawaiian shirts, fewer dark suits. Families want to put the “fun” in funerals.

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.

The funeral as we know it is becoming a relic — just in time for a death boom

By   Karen Heller April 15 Ed note: Funerals are changing in ways that will bring culture shock and a shake of the head of s...