Tuesday, January 17, 2017
Kaiser Health News ran a story about a project that provides palliative care to individuals who are homeless and terminally ill. Mobile Team Offers Comfort Care To Homeless At Life’s End covers a pilot project in Seattle. "Since January 2014, the pilot project run by Seattle/King County Health Care for Homeless Network and UW Medicine’s Harborview Medical Center has served more than 100 seriously ill men and women in the Seattle area, tracking them down at shelters and drop-in clinics, in tents under bridges and parked cars." The project is funded through 2017 and is designed to avoid unneeded or unwanted care at the end of life while giving people who are homeless input in their care. The care providers arrange for the clients to get medical treatment (through Medicaid or pro bono care), follow up with patients, help patients make decisions and care for them so they don't die alone.
The mobile program has some advantages over other existing programs, such as going to where the patients are located and the providers are "more likely to engage the hardest-to-reach patients, those distrustful of medical care and outsiders...." Although the medical treatment is important, so far, the team is finding that coordination of care is a huge benefit of the mobile program. Mobile palliative care programs do exist worldwide, but aren't prevalent in the U.S. "Worldwide, there are only a few other mobile palliative care programs, all outside the U.S. The closest one in North America is the Palliative Education and Care for the Homeless program — known as PEACH — in Toronto."
Wednesday, January 11, 2017
I'm much overdue in writing about a terrific, recent workshop at Arizona State University's Sandra Day O'Connor College of Law on "The Aging Brain." For me it was an ideal gathering of disciplines, including experts in neurology, psychology, health care (including palliative care and self-directed aid-in-dying), the judiciary, and both practitioners and academics in law (not limited to elder law). Even more exciting, that full day workshop (11/18/15) will lead into a public conference, planned for fall 2017.
Key workshop moments included:
- Preview of a potentially ground-breaking study of early-onset Alzheimer's Disease (AD) centered on a family cluster in the country of Columbia with a genetic marker for the disease and a high incidence of onset. By "early onset," we're talking family members in their 40s. The hope is that by studying the bio-markers in this family, that not only early onset but later-in-life onset will be better understood. Eric Reiman, with professional affiliations with Banner Health, Arizona State University and University of Arizona, spoke at the workshop, and, as it turned out, he was also featured on a CBS 60 Minutes program aired a short time later about the family-based study. Here's a link to the CBS transcript and video for the 60 Minutes program on "The Alzheimer's Laboratory."
- Thoughtful discussion of the ethical, legal and social implications of dementia, including the fact that self-directed aid-in-dying is not lawful for individuals with cognitive impairment. Hank Greely from Stanford University Law and Medical Schools, and Professor Betsy Grey for ASU's Sandra Day O'Connor College of Law led discussions on key issues. As biomarkers linked to AD are identified, would "you" want to know the outcome of personal testing? Would knowing you have a genetic link to AD change your life before onset?
- Overview of recent developments in "healthy" brain aging and so-called "anti-aging" treatments or medications, with important questions raised about whether there is respected science behind the latest announcement of "breakthroughs." Cynthia Stonnington from the Mayo Clinic and Gary Marchant from ASU talked about the science (or lack thereof), and Gary raised provocative points about the role of the FDA in drug approvals, tracking histories for so-called off label uses for drugs such as metformin and rapamycin.
I very much appreciate the opportunity to participate in this program, with special thanks to Betsy Grey and federal Judge Roslyn Silver for making this possible. I've also enjoyed serving as occasional guest in Judge Silver's two-semester Law and Science workshop with ASU law students. Thank you! For more on the Aging Brain programming at ASU, see here.
January 11, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Programs/CLEs, Science | Permalink | Comments (0)
Tuesday, December 27, 2016
The mayor of DC signed aid-in-dying legislation for the District which now has to be sent to Congress for a 30 day review period. Bowser quietly signs legislation allowing terminally ill patients to end their lives explains that the law is based on Oregon's statute. Congress has 30 days to approve or override it, Washington, D.C., Approves Aid-in-Dying Bill.
Thursday, December 22, 2016
Kaiser Health News reported that "a coalition of emergency and social service providers is working to create an electronic registry for POLST forms so they will be available to first responders and medical providers when they are needed. The group is starting with a three-year pilot project in San Diego and Contra Costa counties that could serve as a model for a single, statewide registry. Paper-based POLST forms are used across the nation, but electronic registries exist only in a few states, including Oregon, New York and West Virginia."
The article, California Tests Electronic Database For End-Of-Life Wishes, explains that the registry is envisioned as a cloud-based portal where the providers would load the forms. The advantage, of course, is that the provider would have access to the POLST regardless of the patient's location. Since multiple agencies are involved, there are some hurdles to overcome to make this a reality. One expert quoted in the article prefers that the registry be expanded to include advance directives as well as POLST forms.
Wednesday, December 21, 2016
Last week Colorado's governor signed the medical aid-in-dying bill on December 16, 2016. The law went into effect immediately, according to an article in the Denver Post, Colorado medical-aid-in-dying law signed by Gov. John Hickenlooper, takes effect immediately. The law had strong support from voters. The week before the Governor signed the bill into law, the Denver Post ran an article that many folks in Colorado were already making inquiries about requesting the prescriptions. The article noted that the request form for those patients with terminal illness has been made "available on the Compassion & Choices website. The Colorado Department of Public Health and Environment will keep the form, along with an attending-physician form, and track the number of people who seek to use the law."
Monday, December 19, 2016
We have written several posts about the graying of the prison population. Here is one more-looking at the long term care prisons provide, functioning in some instances as a nursing home or a hospice. Kaiser Health News (KHN) ran the story, More Prisoners Die Of Old Age Behind Bars.
The number of federal and state prisoners age 55 or older reached over 151,000 in 2014, a growth of 250 percent since 1999.
As this population grows, prisons have begun to serve as nursing homes and hospice wards caring for the sickest patients. The majority of state prisoners who died in 2014 were 55 years or older, and 87 percent of state prisoners died of illnesses, according to the report. The most common illnesses were cancer, heart disease and liver failure.
The article, noting that elders may have multiple health conditions, reports of one inmate with dementia who was placed in the general population rather than in the medical wing. The article also discusses the early release program in some states, known as "compassionate release"
For prisoners clamoring to spend their dying days at home, U.S. prison jurisdictions have some laws on the books, often called “compassionate release” or “medical parole,” allowing for early release if prisoners are very sick and not a threat. But in practice, very few inmates are set free through these programs, said Dr. Brie Williams, director of the University of California Criminal Justice and Health Project in San Francisco.
However, compassionate release isn't always the solution as the article points out, especially when those seeking release are violent offenders, as the article explains some instances where early release of a prisoner resulted in another crime, or release was obtained through fraud. But without compassionate release, the prisoners die in prison, and thus the prison needs to provide nursing home or hospice care for inmates.
What's the solution to this growing problem? " Williams has been watching the population of older prisoners continue to grow, outpacing the general population of the U.S. As this trend continues, she said, prisons and jails need to catch up... 'I’m talking about a massive expansion of the field of palliative care into the correctional system,” she said, “so it’s integrated into the fabric of correctional care.'”
Thursday, November 3, 2016
The Guardian ran a story last month about proposed legislation in the Netherlands for elders who aren't terminally ill, but instead believe they have lived long enough. Netherlands may extend assisted dying to those who feel 'life is complete' explains that "[t]he Dutch government intends to draft a law that would legalise assisted suicide for people who feel they have “completed life” but are not necessarily terminally ill." Cabinet ministers have provided the Dutch Parliament with a letter about the plan, explaining "people who 'have a well-considered opinion that their life is complete, must, under strict and careful criteria, be allowed to finish that life in a manner dignified for them'." The intent is to limit the law's application to elders "'because the wish for a self-chosen end of life primarily occurs in the elderly, the new system will be limited to' them." The article indicates that there would be safeguards in the law. The target for completing the draft legislation is the end of 2017.
Thanks to Ron Hammerle for alerting me to the proposed legislation.
Tuesday, November 1, 2016
With just a few more days until the election, Coloradans are considering whether to vote in favor of physician aid-in-dying. Colorado Wrestles With Ethics Of Aid-In-Dying As Vote Looms published by Kaiser Health News (KHN) explains why some are supporting the measure, and others are opposing it. As well, both sides are gathering large amounts of money to support their positions:
The ballot initiative is drawing passion — and plenty of money.
According to the latest filings with the Colorado Secretary of State’s office, backers have raised about $5.6 million, mostly from Compassion & Choices Action Network.
The “No Assisted Suicide Colorado” campaign has raised $2.4 million. That money is primarily coming from the Roman Catholic Archdiocese of Denver, which has donated $1.1 million, as well as other archdioceses around the country.
The Colorado Medical Society has taken a neutral position and the story offers some statistics about doctors' views of the measure, with a majority (although it's close) supporting the measure.
Monday, October 31, 2016
The Washington Post recently had a good article titled Facing Financial Reality When Early Dementia is Diagnosed. It begins with Chuck McClatchey's realization that something was wrong:
He moved to Fort Worth at age 61 with his partner Bobbie Duncan, and they spent $25,000 in savings on a fixer-upper house. His plan was to work until he was 70. But then things got strange. “I was having trouble understanding new technologies and things that I should have known off the top of my head” and having trouble using Word and Excel and PowerPoint, “things I had known for years."
He left that job but had problems in another, simpler job at Lowe’s.
Then one day, amid growing confusion, came clarity.
“I brought home a little desk for me to put together,” he said. “I love to put things together, the more complicated the better.” It should have taken about half an hour. Instead, two hours later, “the pieces just weren’t going together like I thought they should.”
Duncan finally said what they both knew. He needed to see a doctor about what was going on in his brain. The diagnosis was Alzheimer’s. . . .
McClatchey's early diagnosis allowed him to get help while he was still well able to participate in planning. He applied for Social Security disability at age 61 and also became an "early stage advisor" for the the Alzheimer's Association.
Reading this article reminded me of a good friend who also received a diagnosis of Alzheimer's at an early stage. Betty has often inspired me by how she has approached this fact. She quietly told friends of her diagnosis, but she did not retreat from life. Betty stays engaged and has a full social life. She has made critical accommodations -- she keeps a daily journal to help with tasks and memory -- and her children have rallied to support and help her, while still giving her as much autonomy as possible. Indeed, her family was instrumental in these changes as they insisted on that first evaluation, rather than brushing away early warning signs as merely due to stress. Thus, "self awareness" of both Betty and her family has been essential in creating a short and long range plan for the future.
The Post article also suggests that not every financial professional is skilled at recognizing how to help individuals with cognitive impairments, whether diagnosed or undiagnosed. I think this is true for attorneys and other professionals as well. Good intentions alone are not enough. From the article:
Being good with money isn’t the only skill required to help dementia sufferers. Corey Purkat, an Oakdale, Minn., financial planner, found himself unable to help a couple in their 80s who hired him to help sort things out in the early stages of the wife’s dementia. She had been a financial professional whose memory issues rapidly worsened. As they did, “she got defensive that someone would have to help her with something she had done for a living.” That put more stress on her husband, who decided “he wasn’t up to making the hard decisions.”
“I did what I could, and I did the best I could,” he said of their amicable parting. But if a similar case comes up in the future, he said, “my goal is to refer them to someone with more experience” with dementia.
It takes courage to get a diagnosis when early, subtle warning signs appear. It takes courage to help a family member get that diagnosis. Our thanks to George Washington Law Professor Naomi Cahn for sharing the link to this and other timely Washington Post articles.
Sunday, October 30, 2016
The New England Journal of Medicine published a study that shows by region where people spend more time at home at the end of life. Days Spent at Home — A Patient-Centered Goal and Outcome notes that
Being home at the end of one’s life will never be a universal goal, but our experience and academic research suggest that, all else being equal, patients would rather be at home than in health care facilities. When surveyed about their preferences for dealing with a terminal illness, most people (86%) indicated that they would prefer to be at home in their final days. In addition, they would not want to be on a ventilator in order to gain an extra week of life, and they are not opposed to drugs that could improve symptoms but potentially shorten life. These preferences are highly consistent across regions of the country and people’s socioeconomic status.1 Despite this consistency in end-of-life preferences, there is wide regional variation in the intensity of, expenditures on, and locations of care provided during the last 6 months of life.
The Wall Street Journal reported on the study. Where the Elderly Die Can Vary by Region, Study Shows explains that
How much time people spend in hospitals or nursing homes in the final months of life, instead of at home, varies widely depending on where they live, new research shows.
Across the Rockies and regions of the Gulf Coast, the dying spend more than two additional weeks hospitalized or in other facilities, on average, compared with those at the end of life in the Midwest and Montana, researchers reported Wednesday in the New England Journal of Medicine.
In other parts of the country, the picture is more mixed but still differs sharply from one community to another.
The study also looks at the differences in Medicare spending as a result of the regional variations. "Research suggests one reason for the geographical spending swings may be that doctors practice medicine differently in some areas of the country than others, with some doctors doing more despite little difference in results." Even in some instances where the patient's care was supposed to be delivered at home, that didn't occur. "The ... study also found that health-care and hospice services intended to keep people at home perhaps did not do so. Regions where use of home care and hospice were greater also had higher use of hospitals and nursing homes ...."
Tuesday, October 25, 2016
The New York Times ran an article recently on individuals voluntarily refusing nutrition and hydration as a way to speed up the end of life. The VSED Exit: A Way to Speed Up Dying, Without Asking Permission focuses on individuals who voluntarily give up eating and drinking. We know that only a handful of states offer Physician-Aided Dying and even in states where that is legalized, not everyone fits within the parameters of the statute. "In end-of-life circles, [the] option [voluntarily giving up food and fluids] is called VSED (usually pronounced VEEsed), for voluntarily stopping eating and drinking. It causes death by dehydration, usually within seven to 14 days. To people with serious illnesses who want to hasten their deaths, a small but determined group, VSED can sound like a reasonable exit strategy."
The article notes that for individuals who avail themselves of VSED, no law seems to be needed (although there is still some uncertainty on that point), no court intervention is required, but the individual needs a lot of fortitude, “'It’s for strong-willed, independent people with very supportive families,' said Dr. Timothy Quill, a veteran palliative care physician at the University of Rochester Medical Center."
One unanswered question is whether VSED is "legal".
For a mentally competent patient, able to grasp and communicate decisions, probably so, said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn. His research has found no laws expressly prohibiting competent people from VSED, and the right to refuse medical and health care intervention is well established.
Still, he pointed out, “absence of prohibition is not the same as permission.” Health care professionals can be reluctant to become involved, because “they want a green light, and there isn’t one of those for VSED,” he added.
The question grows much murkier for patients with dementia or mental illness who have specified VSED under certain circumstances through advance directives. Several states, including Wisconsin and New York, forbid health care surrogates to stop food and fluids. (Oregon legislators, on the other hand, are considering drafting a bill to allow surrogates to withhold nutrition.)
The article reports on a recent conference and some of the issues discussed there. The article also explains that with VSED, death doesn't come as quickly as with PAD, leading to issues for patients and caregivers. The article also notes there are (or likely could be) obstacles to using VSED, such as positions taken by long term care facilities or specific religions.
This topic would be great for a class discussion.
Friday, October 21, 2016
LeadingAge, the trade association that represents nonprofit providers of senior services, begins its annual meeting at the end of October. This year's theme is "Be the Difference," a call for changing the conversation about aging. I won't be able to attend this year and I'm sorry that is true, as I am always impressed with the line-up of topics and the window the conference provides for academics into industry perspectives on common concerns. For example, this year's line up of workshops and topics includes:
- General sessions featuring Pulitzer Prize winning journalist Charles Duhigg on the "The Science of Productivity," 2013 MacArthur Fellow and psychologist Angela Duckworth on the the importance of grit and perservance for successful leadership, and famed neurosurgeon and speaker Sanjay Gupta on "Medicine and the Media."
- Hundreds of sessions, organized by "interest groups":
October 21, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, International, Legal Practice/Practice Management, Medicaid, Medicare, Programs/CLEs, Property Management, Retirement, Science, Social Security, State Cases, State Statutes/Regulations, Veterans | Permalink | Comments (2)
Wednesday, October 19, 2016
The most recent issue of Governing magazine contains an article on the upcoming vote in Colorado on aid-in-dying. Colorado Could Strengthen Aid-in-Dying Movement explains "[t]he movement has been slow to gain momentum -- Oregon was the first state to legalize aid in dying in 1994. But Colorado could reignite the cause in November. Voters there will be weighing Proposition 106, a ballot measure modeled after Oregon's. It would give mentally competent adults with a medical prognosis of six months to live the right to request a prescription to end their lives. Two doctors must agree."
The article notes that looking at past state referendums, one would think the odds are long for Colorado approving the measure. But "Colorado ... may beat the odds. According to a September poll, 70 percent of Colorado voters support the measure, 22 percent oppose it and 8 percent are undecided."
As to be expected with this type of legislation, there are supporters and opponents. Two of the state's newspapers urged voters to not support the bill. The governor of Colorado supports the bill, saying: '"It’s not about suicide.... These people are going to die anyway. They’re terminally ill… I think they should have that right to have medical advice, medical supervision, be able to make sure they have the final say themselves."'
University of Illinois Law Professor Richard Kaplan has a new article available, entitled Religion and Advance Medical Directives: Formulation and Enforcement Implications.
From the abstract:
This Article examines the role of religion in the creation and enforcement of advance medical directives. It begins by setting out the principal similarities and differences between the two types of such directives—namely, living wills and health care proxies (or powers of attorney). It then considers the formulation of religiously oriented advance directives and their incorporation of religious doctrine and imperatives. The Article then addresses the impact that the religious views of an individual patient’s treating physician might have on such directives. Finally, the Article analyzes religiously based challenges to the enforcement of advance medical directives, paying particular attention to the Terri Schiavo case and its continuing significance.
This is an opportunity for us to remind readers to make sure you alert us to your forthcoming articles that touch on elder law topics. Thank you, Dick.
Monday, October 10, 2016
In April 2015, we followed the Iowa state criminal trial of a former state legislator for allegedly having sexual relations with his wife in her nursing home after she was diagnosed with Alzheimer's Disease. See here, here and here, for example. The charge of "sexual assault" was based on an Iowa statute that criminalized a sexual act "between persons who are not at the time cohabiting as husband and wife" if "the other person is suffering from a mental defect or incapacity which precludes giving consent." See Iowa Criminal Code Sections 709.1, 709.1A, and 709.4(2)(a). After a several day high-profile trial -- where emotions were running high on all sides with family members, witnesses and attorneys -- the jury acquitted Henry Rayhons, then age 79. The prosecutor took the position that any theory the wife "consented" to sexual relations was completely irrelevant as a matter of law, because of her debilitating mental condition.
The legal proceedings did not stop with the criminal case. A year later, Henry Rayhons filed a civil suit for damages, alleging various state law claims such as (1) defamation, (2) intentional infliction of emotional distress, (3) malicious prosecution, (4) negligent infliction of emotional distress, (5) negligence, and (6) loss of consortium against various individual defendants. Defendants named on certain of the state law counts included two adult daughters of his deceased wife and his wife's treating physician at the nursing home. Separate counts named the nursing home itself on state law claims of vicarious liability. Count IX of the petition alleged a claim under the federal civil rights statute, 42 U.S.C. Section 1983, against the state prosecutor in the criminal case. In July 2016, the prosecutor, Susan Krisko, removed the case to federal court and filed a motion for summary judgment.
October 10, 2016 in Advance Directives/End-of-Life, Crimes, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (2)
Monday, October 3, 2016
In the Matter of Jane Doe, a case pending in New York state courts for several years, involves tragic facts. A 37-year old woman experienced cardiac arrest in 2003 following complications during delivery of her third child. With a cascading series of events, "Jane Doe" suffered anoxic brain damage and spastic quadriparesis, and became dependent on a respirator and full time care in a nursing home's ventilator unit. Her husband, John D., was initially appointed as her personal needs guardian, while a separate person, an attorney, was appointed property management guardian. In 2012, John D initiated measures to remove his wife's life support; litigation ensued when other family members opposed the proposed withdrawal. After more than a year of proceedings, John D. stepped down as special needs guardian and in 2012, the court appointed one attorney as legal counsel for Jane Doe, and a separate attorney as the new special needs guardian with authority under New York law to determine the patient's health care, including any decision to withdraw life supports.
In 2016, a New York Court held extensive hearings on the surrogate decision of the special needs guardian to withdraw life support for Jane Doe. The court heard testimony from medical professionals, friends and relatives of Jane Doe, including those who recounted conversations with Jane, offered to show that she would not want life sustaining measures to be withdrawn. The testimony, summarized in the opinion, is wrenching. Ultimately, on August 19, 2016, the court issued a detailed ruling, finding that the decision of the special guardian to withdraw life support was supported by the evidence. The court denied the petition of family members opposing termination of life support but also stayed its final order for 60 days to permit further appeals.
On one level, this is case is another window into the use of courts for end-of-life decision-making. But the case also highlights the important roles potentially played by lawyers for the incapacitated person, including as appointed legal counsel for the incapacitated person and separately, as the surrogate decision maker. The surrogate's experience as an elder law attorney was viewed by the court as important to her credentials.
Here are the court's reasons for accepting the surrogate's decision:
Wednesday, September 21, 2016
Remember that line from the song "My Way" immortalized by Frank Sinatra, "[r]egrets, I've had a few...." For some people, telling their families how they feel about them, especially at the end of life, can be daunting and not having done so sooner may be a regret. An ethical will or even the 5 Wishes document can be helpful in explaining things in writing that are too difficult to say.
I was interested in learning about the Stanford Letter Project with its goal "[t]o help, empower and support all adults to prepare for their future and take the initiative to talk to their doctors and their friends and family about what matters most to them at life's end." So what does this project do? The website explains:
All of us will face the end of life one day. Contemplating one’s own death and doing some basic preparatory work is certainly not an easy task. However, the emotional, physical and the financial toll of not doing so is exorbitantly high. People who do not clearly document their wishes and preferences for care at the end of life are often subjected to futile medical treatments that they neither seek nor benefit from. Their families are burdened by the medical bills accrued from the numerous ineffective treatments many patients get at the end of life. In fact, a large research study showed that 62 % personal bankruptcies are due to medical expenses. Over 75% of the people who became bankrupt due to medical expenses had some form of health insurance (i.e., having health insurance does not protect you and your family from medical expense related financial crises).
A major reason for all these problems is that most Americans don’t like to talk about and prepare for the last phase of life. Our research has shown that people find it extremely difficult to discuss this important issue both with their doctors and with their friends and family.
We started the Stanford Letter Project in 2015 based on many years of research and discussions with people from various cultural and social backgrounds. We conducted interviews and focus groups in multiple languages with people in the community and talked to numerous patients and their family members as well as health professionals. We found that while almost all doctors agree that it is important for them to have end-of-life conversations with their patients, most doctors struggle with these conversations. We also found that patients from all ethnic backgrounds feel that is is very important for them to have end of life conversations with their doctors and their family members. However, patients do not quite know how to initiate these conversations.
Based on these research findings, we created the Letter Project tools to help you write letters about your wishes for care in the future.
These letter templates are specifically designed to help you voice the key information needed to help you prepare for the future. Use the Stanford Letter Project tools today to write to your doctor, your friends, and your family. It is free, easy, and extremely important.
The website includes some video letters to friends and families, as well as to doctors. There is also a "template" for an advance directive generated from a user's responses to questions as well as a "life review letter" template.
The goal of our Friends and Family Letter template is to help all Americans complete the seven vital tasks of life review while they still can. We designed this project based on years of clinical experience caring for thousands seriously ill patients and families. ... The template was pilot-tested and refined after extensive discussions with patients from diverse cultures and traditions to identify the seven tasks of life review.
There are 7 tasks for a life review, which include:
Acknowledge the important people in your life...
Remember treasured moments from your life....
Apologize to those you love if you hurt them....
Forgive those who love you if they have hurt you...
Express your gratitude for all the love and care you have received....
Tell your friends and family how much you love them... [and]
Take a moment to say "goodbye.
Check out the website.
Monday, September 19, 2016
On Friday, November 18, 2016, Mitchell Hamline School of Law and Children's Minnesota are hosting a one day seminar on "Ethics, Law and Futility" in Minneapolis. The target audience is described as "Nurses, Physicians, Social Workers, Lawyers, Patient Advocates, Parents/Guardians or anyone interested in ethics, law and futility." The premise is intriguing, as explained in conference promotion materials:
There is a knowledge gap between what is presumed as one’s ethical and legal obligations to patients during cases of futility and what actually their responsibility is. This conference will assist in clarifying these issues and provide the audience with tools for managing futility cases.
Thaddeus Pope, Director of the Health Law Institute at Mitchell Hamline School of Law, speaking on "When may you stop life-sustaining treatment without consent? Leading Dispute Resolution Mechanisms for Medical Futility Conflicts.”
Emily Pryor Winston, Associate General Counsel at Children’s Hospitals and Clinics of Minnesota, on "Minnesota Law and Medical Futility Analysis."
Jack Schwartz, Adjunct Professor at the University of Maryland School of Law and Former Maryland Assistant Attorney General, on "The Ethics of Legal Risk."
For more, see the home page for the symposium, which provides registration materials.
September 19, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Ethical Issues, Health Care/Long Term Care, Programs/CLEs, State Statutes/Regulations | Permalink | Comments (0)
Wednesday, September 14, 2016
The American Journal of Alzheimer's Disease & Other Dementias ran an article on Pain in Hospice Patients with Dementia: The Informal Caregiver Experience. The abstract explains:
Introduction: At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia.
Methods: We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with dementia who had chosen pain as the challenge they wanted to work on within a problem-solving therapy intervention.
Results: The thematic analysis of sessions with 51 caregivers identified 4 themes: difficulty in communicating with patients, lack of consistent guidance from health-care professionals, perceived uncertainty about the etiology of pain, and secondary suffering.
Discussion: Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.
I thought the points made in the discussion were well-taken. Think about a person with dementia and her ability to communicate regarding her pain level.
[The study] findings indicate that caregivers of persons with dementia in hospice face numerous and significant challenges when it comes to managing their loved ones’ pain. Several studies have already demonstrated that the needs of people with dementia at the end of life are not fully met and that caregivers require more support at this time as they may feel exhausted and alone. Furthermore, while communication between health-care providers and caregivers is important, it does not often take place at times of crisis, affecting overall quality of care... Caregivers described uncertainty about the etiology of pain, difficulties in communicating with patients, lack of consistent guidance from health-care professionals, and secondary suffering as the factors that prevented them from properly and effectively managing pain in their loved ones. Thus, these findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.
Well worth reading!
Monday, September 5, 2016
The Washington Post ran an article last month that looked at the provision of treatments to those who are at the end of life. Mission creep doesn’t benefit patients at the end of life explains
Here in America, there is a deeply held belief that advances in medicine will eventually conquer or cure the chronic scourges of cancer, dementia, heart disease, lung disease and diabetes. This notion leads many elderly patients to seek aggressive treatment not only to spare their loved ones grief but because they hope (and expect) to be cured, if only they hold on just a little longer.
So how often is futile care provided? And why? The story reports "more than 75,000 people older than 85 die in intensive care units seeking care that proves to be futile, according to a 2004 study, and why more than 65 percent of our senior citizens die in institutions when a significant majority say they would prefer to die at home, according to a 2014 report by the Institute of Medicine." So what does the author mean by "mission creep" when patients make choices?
Not every patient has the option to decline surgery for a threatening aneurysm or chemotherapy for late-stage cancer. Most patients have multiple smaller decisions to make in the mission creep of treatment vs. care. These patients and their families need help thinking about the natural progression of aging and visualizing what they want at the end. Then, if they decline treatment and choose palliative care, they can consider an exit strategy.
So oversimplified, this boils down to a quality vs. quantity discussion. The author recommends that when the patient is an elder, "that conversation should include a discussion about futile treatments vs. making sure the last days on earth are comfortable...." and that "discussions with our trusted physicians should evolve from how to die later to how to die better, including with an exit strategy."