Monday, February 12, 2018
Sorry for the late news but Kaiser Health News is offering a live discussion via Facebook Live! and Twitter on "Living Well with Dementia" on Tuesday, February 13, from 12:30 to 2:00 p.m. Eastern Time.
Hear are details:
Join Kaiser Health News on Tuesday, Feb. 13, from 12:30 to 2:00 p.m. ET for an informative and important discussion about improving care and services for people with dementia and supporting their caregivers. It’s an opportunity to learn from experts in the field about the challenges and difficulties facing the patient, the caregiver, the community and policymakers. Topics will include understanding the stages of dementia from a medical, social, psychological and environmental perspective (it’s not just memory loss); how to find help; how to manage difficult behaviors; and understanding medications for people with dementia.
Kaiser Health News’ “Navigating Aging” columnist Judith Graham will moderate a discussion with you and a panel of experts as we explore this issue.
Our panelists are:
- Nancy A. Hodgson, Ph.D., RN, FAAN, University of Pennsylvania, an expert on dementia care and end-of-life care for people with dementia;
- Helen Kales, M.D., University of Michigan, a geriatric psychiatrist and expert on dementia care and mental health issues;
- Yvonne Latty, BFA, MA, a journalist and professor, who is dealing with her mother’s Alzheimer’s;
- Katie Maslow, MSW, Gerontological Society of America, an expert on improving care for people with dementia and supporting their caregivers; and
- Mary L. Radnofsky, Ph.D., a former professor who lives independently since being diagnosed twelve years ago with dementia and is an advocate for people with dementia.
Monday, January 29, 2018
California Healthline reports a shift in doctors' views on support for medical aid in dying, with the Massachusetts Medical Society becoming the latest chapter of the American Medical Association to drop its past opposition and to adopt a "neutral" position on medical aid in dying
From the Healthline report:
When the end draws near, Dr. Roger Kligler, a retired physician with incurable, metastatic prostate cancer, wants the option to use a lethal prescription to die peacefully in his sleep. As he fights for the legal right to do that, an influential doctors group in Massachusetts has agreed to stop trying to block the way.
Kligler, who lives in Falmouth, Mass., serves as one of the public faces for the national movement supporting medical aid in dying, which allows terminally ill people who are expected to die within six months to request a doctor’s prescription for medication to end their lives. Efforts to expand the practice, which is legal in six states and Washington, D.C., have met with powerful resistance from religious groups, disability advocates and the medical establishment.
But in Massachusetts and other states, doctors groups are dropping their opposition — a move that advocates and opponents agree helps pave the way to legalization of physician-assisted death.
The American Medical Association, the dominant voice for doctors nationwide, opposes allowing doctors to prescribe life-ending medications at a patient’s request, calling it “fundamentally incompatible with the physician’s role as healer.”
But in December, the Massachusetts Medical Society became the 10th chapter of the AMA to drop its opposition and take a neutral stance on medical aid in dying.
The California Medical Association ended its opposition to physician aid in dying in 2015, and new laws followed there in 2016, along with new laws enacted in Colorado and Washington D.C. The article also predicts that changing physician opinions are playing roles in New York. For more read: As Doctors Drop Opposition, Aid-in-Dying Advocates Target Next Battleground States.
Thursday, January 25, 2018
As my blogging colleague Becky Morgan has highlighted in two of her posts this week, about a February conference at Hastings and recent proposals for "dementia advance directives," end-of-life decisions are increasingly high-profile topics for those working in law, medicine and ethics. Add to this the case under review in the Netherlands, where a physician described as a "nursing home doctor" performed euthanasia for a 74-year old woman with "severe dementia." A Dutch law legalizing euthanasia, that came into effect in 2002 and that was recently the subject of new "guidelines for performing euthanasia on people with severe dementia," is also under review. From Dutch News in September 2017:
The case centres on a 74-year-old woman, who was diagnosed with dementia five years ago. At the time she completed a living will, saying she did not want to go into a home and that she wished to die when she considered the time was right. After her condition deteriorated, she was placed in a nursing home where she became fearful and angry and took to wandering through the corridors at night.The nursing home doctor reviewed her case and decided that the woman was suffering unbearably, which would justify her wish to die.
The doctor put a drug designed to make her sleep into her coffee which is against the rules. She also pressed ahead with inserting a drip into the woman’s arm despite her protests and asked her family to hold her down, according to the official report on the death. This too contravenes the guidelines. Once the public prosecution department has finished its investigation it will decide whether or not the doctor, a specialist in geriatric medicine, should face criminal charges.
In reading articles about this matter, I'm struck by how often the articles (and my own post here) draw attention to the woman's age, comparatively "young" at 74, as well as the fact that her euthanasia directive written five years earlier also expressed her wish not to leave her home. If an individual is younger -- with dementia -- does that reduce society's willingness to "allow" aid in dying? If individuals are older -- and what age is old enough -- is it less controversial? And is a family bound by the individual's wishes not to leave her home? Tough questions, indeed.
This case has also drawn attention in commentary in the US, including a January 24, 2018 Washington Post piece with the provocative title, How Many Botched Cases Would It Take to End Euthanasia of the Vulnerable?
Tuesday, January 23, 2018
The Hastings Center has announced an upcoming public workshop on February 12-13, 2018 in Washington, DC. Physician-Assisted Death: Ethical Debates, Professional Challenges, Societal Questions will explore several topics. The website explains
What is known about the access to and practice of physician-assisted death in the United States and in other countries? In U.S. jurisdictions where it is legal, who makes use of this provision? What are the experiences of health professionals? Who is vulnerable? These are some of the questions that will be explored at a public workshop organized by the Board on Health Sciences Policy of the National Academies of Science, Engineering, and Medicine. Hastings Center research scholar Nancy Berlinger is on the planning committee for the workshop, which will take place in Washington, D.C., on February 12 and 13.
“Ethicists, clinicians, patients and their families debate whether physician-assisted death ought to be a legal option for patients,” states the National Academies board in explaining the background and objectives of the workshop. “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.” . . . At the National Academies workshop, [Berlinger] will chair a session on data and lessons from other nations, including Canada, which implemented its PAD provision nationally in 2016. . . .
Sunday, January 21, 2018
I read a recent article in the New York Times as part of the New Old Age Series. Paula Span writes One Day Your Mind May Fade. At Least You’ll Have a Plan. The article is about advance directives for those with dementia as discussed in a recent article published in the Journal of the American Medical Association (JAMA). The idea of the dementia-specific advance directive is to express your wishes based on the specific "phase" of dementia you may enter in the future. The website for this directive is here from which the 5-page directive may be downloaded. The NY Times article describes the directive "In simple language, it maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness."
In the JAMA article, the authors make the case that other existing advance directives aren't particularly helpful for those with dementia because of the way it progresses over time with corresponding diminishing cognitive function (a subscription is required to access the article). The NY Times article notes that "[a]lthough [dementia] is a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious. ... Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks."
The dementia-specific directive describes the person's wishes as "goals of care" and offers four options for each stage of dementia, directing the person to "[s]elect one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage." The directive divides dementia into three stages, mild, moderate and severe.
There are already a number of types of advance directives, with recent pushes for POLST and other initiatives such as the Conversation Project. Then there is the Five Wishes document, which as been around for a number of years. Attorneys may be incorporating dementia-specific instructions into advance directives already.
January 21, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Tuesday, January 16, 2018
My sister and I have been interviewing locations for several weeks as possible residential settings for our mother, especially as she is no longer able to handle the stairs in her two-story home, but feels trapped by not being able to choose on her own where to walk. We know that the best way to approach this task is in small doses, and to do it before there is an emergency that limits choices. This is actually our second go-round, as we also did this with Mom when we were looking at a place for Dad almost 5 years ago. But we have been very struck by the changes in the marketplace in just that short period of time:
- There are many new options, both large and small, that have come into being in just the last five or fewer years. We have looked at "classic" versions of continuing care communities, as well as what I would call "ala carte" pricing options for communities that offer a wide range of care alternatives, but each for a separate, escalating price and with no assurances of a placement. We've looked at both modest settings and high end "assisted living centers" that are so new the paint has not quite dried. But most of all, what we have found ourselves focusing on are smaller group homes, licensed under that state's law for "assisted living," and under that law the care includes almost all necessary care, other than certain so-called skilled services (such as catheters, feeding tubes, or I.V. hydration). We liked the small group setting because they often were in a neighborhood that would make our mother feel at home, while still offering a purposeful renovation that included carefully designed toilets, showers and flooring for easier movement. The price range is stunningly broad between these options, too.
- Doctors are not always the best advisors on choices. We have found that even though our mother has a wonderful primary care doctor, and even though that doctor makes it known that most of his patients are older, he did not seem to be aware that there are group home options. He kept telling us we'd need a "skilled care nursing home." But, as Mom has a pretty detailed end-of-live directive that rejects feeding tubes, and similar skilled care interventions, it seems clear to us that we can look at a well-run facility licensed for assisted living that will be able to provide appropriate care through her last days.
- A lot of the smaller places are accessed through what I would call "brokers." When you do internet research, the odds are that your first contacts will be with some kind of "finder." Most of these are paid by the facilities, rather than the families conducting the searches. As such, there is the clear potential for them to steer families to "their" facility clients. I know from insiders in the industry that the fees are often the equivalent of one month's fee at the chosen location. While not necessarily a negative, as a good broker is only successful if he or she really knows the available inventory of residential options, the fees are something that can dramatically impact smaller group homes that are operating on a narrower margin.
Additional trends we noticed? We discovered that a small group home that appears to be a "family" operation, may actually be part of a chain of homes with a single corporate owner. On the other hand, at several of the places we visited, we learned the owner had recently purchased another house in the same neighborhood, and was in the process of a second renovation. Also, as for staffing, we noticed that in certain parts of the city, all of the caregivers were immigrants from the same country, whether Poland or Pakistan or elsewhere. Another reminder that realistic immigration policies are a key component to senior living.
Finally, probably our strongest reaction was to differences in what can only be called old fashioned "customer service." One "famous," established CCRC completely lost our interest when the person at the front desk never made direct eye contact with us, instead keeping one hand on a cell phone and the other hand on a very dirty "wet wipe" she said she was using to clean surfaces because it was "flu season." It didn't help that we went through three different people to find one who could give us a tour during a scheduled visit (the first two were so new they didn't have knowledge of the full campus.) At the smaller group homes, we definitely noticed when the persons we met with greeted current residents by name as they gave us a tour. Also, did they know the names of their own staff members -- and did they introduce us to each other? When a trip hazard was lying in wait on the floor, did they pick it up -- or merely avoid it?
In addition to asking about staffing ratios and open visiting hours, we wanted to know about how long each of the staff members we met had worked at the particular place. Finally, our whole family likes dogs and therefore it was a plus when we found a place that had a "house dog" that the residents clearly loved, but we recognize that not every place can handle the extra work it takes to maintain a pet on site.
A sad irony is that it is unlikely our mother will live in the same care setting that was so perfect for our father. That place is an assisted living center with four cottages, purpose built for Alzheimer's care, on a five acre setting. But it has become clear to us that even though Mom was the one who chose it for Dad, and it is a wonderful place, with people we still love, our mother probably doesn't want it for herself. In the last few months of our father's residence there before his death, she visited less and less often, and we came to realize she had "already" rejected it for herself. It wasn't about memories of Dad; rather, it was about what it meant to "also" have the same cognitive impairment. The director, who has become a good friend of mine, said that is not unusual -- that even successful residential settings are rarely chosen by families for second or third placements because the next loved one can be hypersensitive to the reality of that choice. Senior care living -- a tough business in which to generate repeat business.
January 16, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing, State Statutes/Regulations | Permalink | Comments (1)
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