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any form of assisted suicide and requires “comfort care” for patients if artificial nutrition and hydration is withdrawn.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.
Monday, May 22, 2017
In what is described as a "first" for the National Academy of Elder Law Attorneys (NAELA), the organization through its New York Chapter will present argument on behalf of individuals seeking to establish access to "aid in dying." On April 27, the New York Chapter was granted leave to appear as amicus curiae in Myers v. Schneiderman before the New York Court of Appeals. Oral arguments are scheduled in Albany on May 30, 2017.
At issue is New York's penal law prohibiting assistance in "suicides." The original suit, filed in February 2015, sought a ruling that the statute, characterized by opponents as "antiquated," should be interpreted as not reaching the conduct of a physician that provides aid-in-dying where the patient is terminally ill and mentally competent and voluntarily seeks "terminal medication." Alternatively, the opponents of the law argue that the statute violates the rights of privacy and/or equal protection guaranteed by the New York State Constitution. New York's trial level court dismissed the challenge as a matter of law, on the grounds that New York's penal law was "clear on its face."
In joining the challenge to the dismissal, which was affirmed by appellate division, New York NAELA wrote:
As an organization of lawyers who represent the elderly and persons with disabilities, the New York Chapter [of NAELA] believes that a proper interpretation of New York's "assisted suicide" laws and due consideration of Appellants' constitutional challenges should be based on a fully developed factual record. These are issues of great moment to the elderly and those who love them and to the administration of justice in this State. This Court should have the benefit of a hearing and findings of relevant evidence before deciding them. . . .
What would assist this Court in fairly construing the Penal Law are facts relating to aid-in-dying. While the language of the statute is the starting point for interpretation, its words do not exist in a vacuum.
For more on the arguments, including links to the various parties' appellate briefs in Myers, see the "End of Life Liberty Project."
May 22, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Discrimination, Ethical Issues, Health Care/Long Term Care, Science, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Tuesday, March 28, 2017
I'd previously blogged about special EMTs that can help avoid trips to the ER for certain folks near the end of life. Kaiser Health News recently ran a story about "pre-hospice": ‘Pre-Hospice’ Saves Money By Keeping People At Home Near The End Of Life. The article explains the problem and one company's solution:
Most aging people would choose to stay home in their last years of life. But for many, it doesn’t work out: They go in and out of hospitals, getting treated for flare-ups of various chronic illnesses. It’s a massive problem that costs the health care system billions of dollars and has galvanized health providers, hospital administrators and policymakers to search for solutions.
Sharp HealthCare, the San Diego health system where [one individual] receives care, has devised a way to fulfill [the patient's] wishes and reduce costs at the same time. It’s a pre-hospice program called Transitions, designed to give elderly patients the care they want at home and keep them out of the hospital.
How does this pre-hospice work? The article explains it. "Social workers and nurses from Sharp regularly visit patients in their homes to explain what they can expect in their final years, help them make end-of-life plans and teach them how to better manage their diseases. Physicians track their health and scrap unnecessary medications. Unlike hospice care, patients don’t need to have a prognosis of six months or less, and they can continue getting curative treatment for their illnesses, not just for symptoms."
The article suggests that the need for pre-hospice programs will only grow in the near future as the Boomers keep growing older and older. But there are obstacles and one in particular is huge. If you guessed money, you'd be right. "[A] huge barrier stands in the way of pre-hospice programs: There is no clear way to pay for them. Health providers typically get paid for office visits and procedures, and hospitals still get reimbursed for patients in their beds. The services provided by home-based palliative care don’t fit that model."
The article discusses the need for and importance of palliative care, other innovations and the catalyst for the pre-hospice program. Delving into the advantages of the pre-hospice program and how it works for patients. The article notes that not only will there be an increased need for programs to keep folks at home, in addition to the payment hurdle, there are "not enough trained providers are available. And some doctors are unfamiliar with the approach, and patients may be reluctant, especially those who haven’t clearly been told they have a terminal diagnosis." And, of course, what will Congress do about health insurance, including Medicare.
Monday, March 27, 2017
Amos Goodall sent me a link to an article he recently wrote, How to plan for end-of-life wishes. Referencing the Conversation Project, Amos writes about how important it is for a client to let others know what the client wants.
These questions boil down to the four Ws:
▪ Who should speak for you when you can’t?
▪ What should they be saying?
▪ When do you want these issues raised?
▪ Where do you want to spend your final time — at home or in a hospital?
Essentially, you need to let folks know how you want to live your life at its end.
After discussing the law, Amos turns back to the Conversation Project and references the toolkit that is available and notes that his firm has adapted some resources for their clients which anyone can access via his firm's website.
According to the project's website, the purpose of the Conversation Project is "to helping people talk about their wishes for end-of-life care." The project offers a 12 page starter kit (available in 8 languages) as well as a 16 page toolkit on choosing and being a health care proxy. There's a 20 page starter kit for those who have a family member or significant other with dementia, including Alzheimer's disease and an 11 page kit for talking to the patient's doctor. There's also one when the patient is your child.
Monday, March 13, 2017
We don't know what the future holds for us, especially in our final years, but we can bet that we may be faced with some health care issues. Wouldn't it be great to have a guidebook for the final years? Well now you can. According to an article in Kaiser Health News, A Playbook For Managing Problems In The Last Chapter Of Your Life, there is "a unique website, www.planyourlifespan.org, which helps older adults plan for predictable problems during what Lindquist calls the “last quarter of life” — roughly, from age 75 on...“Many people plan for retirement,” the energetic physician explained in her office close to Lake Michigan. “They complete a will, assign powers of attorney, pick out a funeral home, and they think they’re done.”...What doesn’t get addressed is how older adults will continue living at home if health-related concerns compromise their independence." The focus isn't on end of life planning, according to the article, it's the time before. "Investigators wanted to know which events might make it difficult for people to remain at home. Seniors named five: being hospitalized, falling, developing dementia, having a spouse fall ill or die, and not being able to keep up their homes."
The result of the work is an interactive website that deals with issues such as falls, hospitalization, dementia, finances and conversations. The website offers that "Plan Your Lifespan will help you learn valuable information and provide you with an easy-to-use tool that you can fill in with your plans, make updates as needed, and easily share it with family and friends." Try it!
Wednesday, March 8, 2017
When older adults lack the capacity to make important health care decisions for themselves and have nothing in writing naming a person to make decisions for them, how can the right health care decisions be made in clinical settings? Over the past 40 years, nearly every state has passed statutes on health care decision-making. The laws vary from state-to-state, from authorizing living wills or powers of attorney for health care to defining the conditions when withholding or withdrawing life sustaining care is permitted for patients who lack capacity. Despite years of legal guidance, questions remain regarding the statutory applicability in clinical practice. In 2016, the American Bar Association Commission on Law and Aging (ABA COLA) initiated a national survey to explore health care clinicians’ perspectives on questions regarding capacity and decision-making. Findings explore instances when the law and clinical practice clearly align, when there are consultation differences between lawyers and clinical providers, and outline the areas that still present the greatest challenges for health care decision making in clinical settings.
In this webinar, David Godfrey, Senior Attorney to the ABA COLA, will detail the survey findings and implications for the health and aging network working with older adults with diminished capacity. The webinar will be accompanied by an Issue Brief that highlights the survey findings and provides recommendations for the field.
To register for this free webinar, click here.
Tuesday, March 7, 2017
From the Washington Post, an especially moving account written by former White House Communications Director Jennifer Palmieri about her sister, who died at age 58 following some ten years with "early onset" Alzheimer's:
Every day, more Americans receive the devastating news that someone in their family has this affliction. For now, there is not a lot of hope for recovery. It can make you envious of cancer patients; their families get to have hope. Having come through this experience with my sister, I am afraid that I can’t offer these new Alzheimer’s families hope for a recovery. But I do hope that by relaying the story of my sister’s journey, I can offer them some peace.
My sister Dana was brilliant, beautiful, full of positive energy, a force of nature. She was not an easy person. She was driven and successful, and, as the disease progressed unbeknown to all of us, it became harder to connect with her. Ironically, that began to change once she got the diagnosis.
When she called each of us with the news, she already had it all figured out. We were all to understand that, really, she saw the diagnosis as a blessing. It was going to allow her to retire early. It would motivate our family to spend time together we would not have otherwise done. It would shorten her life, but she would make sure the days she had left were of the highest quality.
The thoughtful piece can help all of us as we and our family members tackle challenges. For more, read The Blessings Inside my Sister's Alzheimer's Disease.