Friday, December 8, 2017
A haunting story and visual images of growing old alone in Japan, from the New York Times, including this excerpt:
To many residents in Mrs. Ito’s complex, the deaths were the natural and frightening conclusion of Japan’s journey since the 1960s. A single-minded focus on economic growth, followed by painful economic stagnation over the past generation, had frayed families and communities, leaving them trapped in a demographic crucible of increasing age and declining births. The extreme isolation of elderly Japanese is so common that an entire industry has emerged around it, specializing in cleaning out apartments where decomposing remains are found.
For more, see A Lonely Death, by Norimitsu Onishi, published November 30, 2017.
Thursday, December 7, 2017
The National Academies of Science, Engineering and Medicine released information about planning for a workshop Physician-Assisted Death: Scanning the Landscape and Potential Approaches - A Workshop
The 2014 case of Brittany Maynard, a 29-year old woman suffering from terminal brain cancer who made public her desire to have an option to end her life through medication, brought to the forefront of the public eye the age-old question of whether terminally ill patients should have access to a physician's assistance to hasten death. To gain the option, Ms. Maynard relocated from California to Oregon, where a "death with dignity" law has been in effect for nearly 20 years. More recently, five jurisdictions (California, Colorado, District of Columbia, Vermont, and Washington) have legalized physician-assisted death, and physician-assisted death is also legal in one state (Montana) by virtue of a ruling of that state's Supreme Court. The question of whether and under what circumstances terminally ill patients can access life-ending medications with the aid of a physician is receiving increasing attention as a matter of public opinion and of public policy. Ethicists, clinicians, patients and their families debate whether physician-assisted death ought to be a legal option for patients. While public opinion is divided, and public policy debates include moral, ethical, and policy considerations, a demand for physician-assisted death still persists among some patients, and the inconsistent legal terrain leaves a number of questions and challenges for health care providers to navigate when presented with these patients. The Board on Health Sciences Policy of the National Academies of Sciences, Engineering, and Medicine will convene an ad hoc committee to plan a workshop that will explore current practices and challenges associated with physician-assisted death, and highlight potential approaches for addressing those challenges.
Stay tuned for more info.
Wednesday, December 6, 2017
I've told my students urban myths before about a tattooed advance directive and use that story to talk about the requirements for making a valid directive. So I was interested in reading the article about the DNR tattoo. Health News Florida ran the story, Did 'Do Not Resuscitate' Tattoo Reflect Patient's True Wish? reports the story of a patient at Jackson Memorial in Miami with a DNR tattoo. A tattoo presents some significant ethical questions for doctors. As this story reflects, the immediate questions are "is it legal and ... is it truly the man's wishes," In this case the patient presented at the ER alone with no ID and no family were reachable. Taking this to the hospital ethics committee, the committee ultimately determined this was a valid expression of the patient's directions. In this case, the tattoo contained the patient's signature. The Atlantic also ran a story, What to Do When a Patient Has a 'Do Not Resuscitate' Tattoo which reports a split of opinions from experts regarding whether the hospital should honor the tattoo. One expert offers
It’s the discussion that matters, not the words on the form (or the tattoo), says Joan Teno from the University of Washington, who studies end-of-life wishes. And in many cases, those discussions don’t happen, or aren’t respected. In a study of bereaved family members, she found that one in 10 say that something was done in the last month of a patient’s life that went against their wishes. “The fact that someone has to resort to a tattoo to have their wishes honored is a sad indictment of our medical system,” Teno says. “We need to create systems of care where patients have the trust and confidence that their wishes will be honored. That’s the important message from this case.”
Note to readers: republished to correct typo. Note to self-don't post with head cold.
Friday, November 10, 2017
Recently there was some coverage about a woman who was being spoon-fed by employees of the facility despite the existence of her advance directive. Kaiser Health News covers the issue in New ‘Instructions’ Could Let Dementia Patients Refuse Spoon-Feeding explains that a group in Washington State has issued “Instructions for Oral Feeding and Drinking”.
As well there's a second document that explains the pros and cons of doing so. There are limits, according to the KHN article.
The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note. ... “If I accept food and drink (comfort feeding) when they’re offered to me, I want them,” the document states. ... But if the person appears indifferent to eating, or shows other signs of not wanting food — turning away, not willingly opening their mouth, spitting food out, coughing or choking — the document says attempts to feed should be stopped. ... And the guidelines tell caregivers to respect those actions.
As well, the KHN article notes, these are guidelines and are not required to be followed.
Thursday, October 26, 2017
Kaiser Health News ran a story last week regarding electronic storage of POLST forms. In Oregon, End-of-Life Wishes Are Just A Click Away highlights a project at Oregon Health & Science University to make POLST forms available electronically. OSHU, working with a tech company, "allow[s] health care providers to electronically find any of the 172,000 active forms in Oregon’s POLST registry with a single click, no matter where they were filed." In 5 months, OSHU doctors have accessed the forms 14,000, according to the story.
We all know the problems that may occur when health care providers don't have ready access to a patient's advance directive documents. This project is designed to alleviate the issue of access to POLST forms, regardless of whether the forms were signed at OSHU or elsewhere. New York has something similar that is web-based allowing patients to complete and access forms throughout New York. End of life wishes of patients in Oregon are more likely followed than any other state in the US according to the article. Making completed POLST forms easily accessible by providers is one step in making that outcome more possible.
Research suggests that POLST forms guide end-of-life care, whether patients die at home or in a health care facility. A 2014 study of deaths among Oregon POLST users found that 6.4 percent of patients who specified comfort-only measures died in a hospital, compared with 44.2 percent of those who chose full treatment — and 34.2 of people with no POLST form on file.
A recent analysis found that seriously ill patients in Oregon are more likely to have their end-of-life wishes honored than those in nearby Washington state — or the rest of the U.S.
Friday, October 20, 2017
The title is Traveling The Valley of Shadow of Death in 2017. Drawing upon both her work and personal experiences, Dr. Lynn points out:
- "First, the life possibilities of an elderly person with increasing disabilities is profoundly depending upon the surrounding community...."
- "Second, the preferences and priorities of elders in this phase of life vary much more than in earlier phases...."
- "Third, we need more reliable and reasonable financing plans. Working-age people still don’t realize that they need to provide for themselves in old age. Policies need to change to make vehicles for saving affordable and reliable...."
- "Fourth, sick and disabled elders living in the community need continuity and reliability across time, instead of the cut-up care system we provide...."
She seems to advocate a unique form of deregulation, concluding:
We need an era of innovation and testing, shaped by the facts of the situation. We need a new set of policies for our new way of living at the end of our lives. Let’s try substantial innovations, mostly by relieving communities of the burdens of past policies and regulations, and let’s learn quickly so we can count on living comfortably and meaningfully in the last years of our lives.
I recommend the whole essay.
Wednesday, October 18, 2017
You may have read recently about a woman who had an advance directive that addressed artificial nutrition and hydration. The SNF where she lived was hand feeding her, over her husband's objections. The trial court sided with the SNF and the state ombudsman who had argued that "state rules to prevent abuse required the center to offer residents three meals each day and provide help eating, if needed." Can one provide in her advance directive that she refuses in advance oral fluids and foods at some point in the future? The Kaiser Health News article, Dementia Patient At Center of Spoon-Feeding Controversy Dies, explores the specific case as well as the issue. The patient, as the title explained, died last week.
Here's the issue illustrated in this matter.
At issue is whether patients with Alzheimer’s and other progressive diseases can stipulate in advance that they want oral food and liquid stopped at a certain point, hastening death through dehydration. It’s a controversial form of what’s known as VSED — voluntarily stopping eating and drinking — a small but growing practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, usually resulting in death within two weeks. .... “The right to VSED is reasonably well-established, but it’s when a person isn’t competent that’s the issue,” said Paul T. Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., who has written extensively on the topic.
So in thinking about a person saying no to food and fluids, "VSED doesn’t require a law or a doctor’s approval. But the question of whether it’s possible for people who can no longer actively consent to the procedure remains ethically and legally unclear. That’s especially true for patients who open their mouths to accept food and fluids...."
Have you looked at your state's laws to see if there is a position on this? According to the article, almost 24 states have laws on "assisted feeding" some of which "specifically prohibit withdrawing oral food and fluids. Other states address only artificial feeding or are unclear or silent on the issue [and] ... Idaho — appears to sanction withdrawal of assisted feeding by a health care proxy" according to an expert quoted in the article. However, "Idaho state law also prohibits any form of assisted suicide and requires “comfort care” for patients if artificial nutrition and hydration is withdrawn. It’s not clear whether a request to halt assisted feeding would be honored" said an expert on Idaho's statute on Medical Consent and Natural Death Act.
October 18, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Food and Drink, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (1)
Friday, October 6, 2017
The last few weeks have been very tough, haven't they? As have the last few months, and perhaps even the last few years.
Many seem to be trying to understand why a 64-year-old "retired" man in the U.S. would assemble an arsenal of weaponry, unleash it on a crowd of innocents enjoying a last few weekend hours of music, and then take his own life. While it is, on a comparative scale, unusual for a 60+ individual to be involved in a mass shooting, "older men" apparently have a comparatively high suicide-by-gun rate. While there may be no way to understand the motivation for the most recent murders, there are still reasons to ask whether aging and deteriorating cognitive health can be factors in gun-related deaths.
In the search for some understanding I read Leah Libresco's opinion piece in the Washington Post: "I used to think gun control was the answer. My research told me otherwise."
In that article, her research on the annual 33,000+ gun deaths in America, led her to several interesting observations and conclusions. She writes, for example, that the statistics showed her:
- "Two-thirds of gun deaths in the United States every year are suicides."
- "Older men, who make up the largest share of gun suicides, need better access to people who could care for them and get help."
Libresco's essay sent me in turn to a feature story, part of a FiveThirtyEight series analyzing annual gun deaths, on "Surviving Suicide in Wyoming," by Anna Maria Barry-Jester. She writes in greater detail about warning signs of deteriorating mental health, especially among older men: isolation, sometimes self-imposed; sleeplessness; depression; anxiety; and unresolved physical health problems.
As these articles point out, limiting access to guns is appropriate for individuals with suicidal thoughts. That's different than "gun control laws." And while guns may too often be the means to effectuate "rash desperate decisions," these researchers also suggest the greatest need is for better public awareness and response to warning signs, and for improved diagnosis and access to effective care, including social, mental and physical health care.
October 6, 2017 in Advance Directives/End-of-Life, Crimes, Current Affairs, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Science, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Thursday, October 5, 2017
CMS has announced the availability of Hospice Compare and it is now live! The website is searchable either by the name of the agency or by zip code. Not only does the website provide general information about hospice, the website provides a consumer checklist, information about Medicare's coverage of hospice care and other useful information. The site allows for comparisons of hospice agencies based on their quality of care. Check it out!
Tuesday, October 3, 2017
The Canadian Elder Law Conference is again hosting a two-day program on the law and policy issues impacting older adults, in Vancouver, British Columbia on November 2-3, 2017.
After taking this course, you will:
be better able to identify and address the legal issues that impact your older client
be familiar with recent trends, developments, and research in the law with respect to elder law topics such as medical assistance in dying, mental capacity, undue influence, independent legal advice, financial abuse, and adult protection
better understand the legal, practical, and ethical issues in relation to older clients with mental capacity and self-neglect issues
The program this year will include a debate on "video surveillance in long-term care," a panel on medically assisted death and advance consent, and a discussion of undue influence and independent legal advice.
For more, see Coming of Age: Elder Law in Canada and Its Future, including registration information.
Thursday, September 28, 2017
So, here we are again. Efforts underway at the federal level to repeal the D.C. aid-in dying law. The Washington Post reported that the House of Representatives voted to repeal the law. House votes to repeal D.C.’s Death With Dignity law; Senate has yet to act explains that "[t]he U.S. House on [September 14, 2017] passed a spending bill that would block five laws affecting the District of Columbia, including the city’s new assisted-suicide law." This is not the first attempt at the Congressional level to repeal the law but it is "the first time either congressional chamber has voted to repeal the District’s Death With Dignity Act... [and] District officials are watching for action from Sen. James Lankford (R-Okla.), who tried unsuccessfully to block the assisted-suicide bill earlier this year and is now chairman of the Senate Homeland Security and Governmental Affairs subcommittee with jurisdiction over the District."
Friday, September 15, 2017
Hear the word hospice and what do you think? The patient is close to dying, right? Kaiser Health News did a story about hospice care that explains the patient doesn't have to be on the edge of dying. Shedding New Light On Hospice Care: No Need To Wait For The ‘Brink Of Death’ examines the misconception about hospice care.
Although hospices now serve more than 1.4 million people a year, this specialized type of care, meant for people with six months or less to live, continues to evoke resistance, fear and misunderstanding... “The biggest misperception about hospice is that it’s ‘brink-of-death care,’” said Patricia Mehnert, a longtime hospice nurse and interim chief executive officer of TRU Community Care, the first hospice in Colorado.
People who have some time left may find that using hospice gives them a better quality of life. "New research confirms that hospice patients report better pain control, more satisfaction with their care and fewer deaths in the hospital or intensive care units than other people with similarly short life expectancies." (The article referenced in the quote requires purchase or subscription). The KHN article explains the differences in the four levels of care offered by hospice, including respite care, routine care, general inpatient care and continuous care. Routine care is the most typical, with visits by aides and an RN, the frequency of which is dictated by the patient's condition. One of the biggest misconceptions, according to the article, the family thinks hospice folks will be in the home with the patient continuously. As a result, the family or patient may need to hire aides or companions to get the needed help. The article discusses provision of medications, choice of doctors, medication concerns, discharge and care of the patient in the last few days of life.
Monday, August 28, 2017
From Oregon, known for its "death with dignity" laws, the dilemma facing a couple who are learning the limits of the laws:
Bill Harris is blunt: For more than a year, he has been trying to help his wife die.
The 75-year-old retired tech worker says it’s his duty to Nora Harris, his spouse of nearly four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.
“Let me be honest: Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her suffering.”
Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.
For more of the story, read "Despite Advance Directive, Dementia Patient Denied Last Wish, Says Spouse."
August 28, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Sunday, August 20, 2017
The Centers for Medicare & Medicaid Services (CMS) is working diligently to make healthcare quality information more transparent and understandable for consumers in all stages of life to empower them to take ownership of their healthcare choices. This includes decisions about end-of-life care, when consumers in a time of vulnerability need transparent, digestible information to make the best choice for their care or the care of their loved ones.
We at CMS understand that there are many difficult decisions that come with a terminal illness—including deciding if hospice is right for you and which hospice to choose—which is why we have launched Hospice Compare. This new website will help empower you by allowing you to easily and quickly compare hospice providers on various aspects of care and assess the quality of care that potential hospices provide.
Hospice Compare provides information on hospices across the nation and allows patients, family members, caregivers, and healthcare providers to compare hospice providers based on some key quality metrics, like what percentage of a hospice provider’s patients were screened for pain or difficult or uncomfortable breathing and if their patients’ preferences are being met. Specifically, the quality measures look at the percentages of patients who received recommended treatment, for example:
- Patients or caregivers who were invited to discuss treatment preferences, like hospitalization and resuscitation, at the beginning of hospice care;
- Patients or caregivers who were invited to discuss beliefs and values at the beginning of hospice care;
- Patients who were checked for pain at the beginning of hospice care;
- Patients who received a timely and thorough pain assessment when pain was identified as a problem;
- Patients who were checked for shortness of breath at the beginning of hospice care;
- Patients who got timely treatment for shortness of breath; and
- Patients taking opioid pain medication who were offered care for constipation.
The information on Hospice Compare can be used along with other information you gather about hospice providers in your area. In addition to reviewing the information on Hospice Compare, you’re encouraged to talk to your doctor, social worker, other healthcare providers, and other community resources when choosing the best hospice for care for you or your loved one.
In addition to Hospice Compare, Medicare also offers a number of other websites that can help you select providers and facilities to meet a wide range of care needs, including Inpatient Rehabilitation Facility Compare; Long-Term Care Hospital Compare; Hospital Compare; Physician Compare; Nursing Home Compare; Medicare Plan Finder; Dialysis Compare; and Home Health Compare.
Hospice Compare is available here
Tuesday, August 15, 2017
Professor Marshall Kapp has recently had an article published in 33 Ga. State Law Review 869. Distinctive Factors Affecting the Legal Context of End-Of-Life Medical Care For Older Persons is the lead article in a symposium volume on end of life issues. Here is the abstract for this article
Current legal regulation of medical care for individuals approaching the end of life in the United States is predicated essentially on a factual model emanating from a series of high-profile judicial opinions concerning the rights of adults who become either permanently unconscious or are clearly going to die soon with or without aggressive attempts of curative therapy.
The need for a flexible, adaptable approach to medically treating people approaching the end of their lives, and a similar openness to possible modification of the legal framework within which treatment choices are made and implemented, are particularly important when older individuals are involved. Of the approximately 2.5 million people who die each year in the U.S., about three-quarters of deaths occur among persons aged sixty-five and older. As stated succinctly by historian Jill Lepore, “[t]he longer we live, the longer we die.”
This article outlines a few of the most salient clinical and social factors that distinguish the large and growing cohort of older persons, in potentially legally and policy relevant ways, from other population groups for whom end-of-life medical treatment choices may come into play. Some practice and policy implications are alluded to briefly.
Thanks to Professor Kapp for letting me know about his article!
Monday, August 14, 2017
Kaiser Health News recently ran a story about the end of life consultations now covered by Medicare. End-Of-Life Advice: More Than 500,000 Chat On Medicare’s Dime offers some interesting statistics on the number of consults. "In 2016, the first year health care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show." In fact, that number is almost double of what the AMA projected for 2016. Although those numbers are good news for the proponents of the law, when compared to the numbers of Medicare beneficiaries overall, the percentage is quite low.
[O]nly a fraction of eligible Medicare providers — and patients — have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.... Nationwide, slightly more than 1 percent of the more than 56 million Medicare beneficiaries enrolled at the end of 2016 received advance-care planning talks, according to calculations by health policy analysts at Duke University....
The article explores some explanations for these numbers, including lack of knowledge of the benefit by doctors and lingering concerns over the "death panels" controversy.
Tuesday, June 27, 2017
A recent story in the Toronto Star covers a ruling from a trial court judge about Canada's Medical Aid-in-Dying law. Advocates hail judge’s decision in woman’s assisted death appeal explains the judge's decision: "[a] 77-year-old woman seeking medical assistance in dying has a “reasonably foreseeable” natural death, a judge declared Monday in an attempt to clear up uncertainty that left her doctor unwilling to perform the end-of-life procedure for fear of a murder charge." The concern in the case was the meaning of "reasonably foreseeable" and the judge held "[t]o be reasonably foreseeable, the person’s natural death doesn’t have be imminent or within a specific time frame or be the result of a terminal condition...."
The judge went on to explain
“The legislation is intended to apply to a person who is “on a trajectory toward death because he or she a) has a serious and incurable illness, disease or disability; b) is in an advanced state of irreversible decline in capability; and c) is enduring physical or psychological suffering that is intolerable and that cannot be relieved under conditions that they consider acceptable,” ....
Sunday, June 4, 2017
The New York Times ran an article giving an update on California's aid-in-dying law. The numbers are not from state officials but come from Compassion in Choices. They report "at least 504 terminally ill Californians have requested a prescription for life-ending drugs since a state law allowing physician-assisted deaths went into effect in June 2016... [representing] ... those who have contacted Compassion & Choices...." The article notes that once the state publishes the required data there will be a more accurate picture of the law's application. The article also references the number of facilities that have written policies on recognizing the prescriptions. The article also reminds us that a lawsuit had been filed some time back to challenge the law, with a hearing scheduled for June 16, 2017.
Tuesday, May 30, 2017
Last week I received an email from the Hastings Center with the subject line "What Do We Owe the Frail Elderly?" This intrigued me because I often have a conversation with my students about what, if anything, we "owe" the generation before us. I typically have this conversation in the context of discussing funding of public benefits and other programs specifically for America's elders. Here is the information about the casebook
A woman juggles caring for her aged father at home and going to work. A volunteer cares for an 83-year-old man who lives alone and wonders why the man’s son doesn’t take more of an interest. Staff members at a nursing home, discussing a patient with dementia who hits staff members, consider whether it’s acceptable to control his behavior with antipsychotic medication, knowing that antipsychotics increase the risk of stroke in people with dementia. These are three of the 10 cases in Caring for Older People in an Ageing Society, the second edition of an online bioethics casebook launched this week. The casebook aims to support professional and family caregivers by helping them recognize and respond to situations that pose ethical uncertainty... The bioethics casebook was the product of a project with the National University of Singapore Centre for Biomedical Ethics, The Hastings Center, and Oxford University’s Ethox Centre. Explore the Casebook.
Additional information about the book is available from The Hastings Center website: "an innovative web-based casebook that focuses on ethical challenges of caring for people in an aging society. It is geared to those who provide community-based care to frail or chronically ill people living at home, in a family member’s home, or in a nursing home. The casebook will include fictional cases along with ethics commentaries, clinical perspectives, reflection and discussion questions, and other resources...."
This second volume of the casebook focuses on elders while the first volume focuses on difficult decisions. For more information, click here.
Wednesday, May 24, 2017
I was catching up on some reading last week when I ran into some information about the PREPARE project. PREPARE for your care provides folks with "a range of tools to help people discuss their wishes for medical care with family, friends, and medical providers." Voice over narration accompanies the web pages in either English or Spanish. The purpose of PREPARE is to help someone "make medical decisions for yourself and others... talk with your doctors ...[and] get the medical care that is right for you." PREPARE not only helps a person make decisions and talk to her doctors, it provides assistance with evaluating priorities, communicating one's wishes to others, and providing flexibility for the decision-maker. PREPARE also helps to ready the person for conversations with her doctors and to complete a 5-step interactive action plan.