Monday, April 2, 2018

Supported Decision-Making as an Alternative to Adult Guardianship

Dickinson Law Presentation and Panel Discussing Guardianship Oversight and the Courts 3.29.18During the Continuing Judicial Education program on "Dementia Diagnosis and the Law" at Dickinson Law on March 29, I offered a list of developments potentially affecting the future of guardianships.  One item on my list could have been a stand-alone session in and of itself -- the concept of supported decision-making.  I promised the audience I would post some additional materials on the topic here.  

For background, as we discussed with the judges, under most states' laws governing guardianships, courts are obligated to search for the least restrictive alternative to a plenary guardianship.  Courts sometimes struggle with this issue, especially for older adults, if the incapacitating issue proves to be any of the forms of progressive neurocognitive disorders associated with dementia. If a judge makes a finding of incapacity, and if there is an appropriate, trustworthy guardian available, the judge may feel that it is better to leave it up to the appointed individual to strike the right balance between protection and autonomy on individual issues such as choice of housing or daily activities.  The court might find that granting full powers, but trusting the guardian to exercise the powers appropriately, is better than requiring the parties to return to the court for a series of orders, as the incapacity advances, conferring new directions for the guardian to follow. 

During the conference we confronted the issues driving the recent calls for reform of guardianship systems, including the latest well-publicized incidents of abuse of authority by an appointed guardian or a private guardianship agency, in locations such as Las Vegas, Nevada and New Mexico.

A published commentary by Cardozo Law's Rebekah Diller, an associate clinical professor, explains the movement behind supported-decision making as a better alternative: 

During  the last several decades, guardianship has been the subject of continual calls for reform, often spurred by revelations of guardian malfeasance and other abuses in the system. Recent developments in international human rights law and disability rights advocacy, however, pose a more fundamental challenge to the institution. Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), with its declaration that everyone, regardless of mental disability or cognitive impairment, is entitled to make decisions and have those decisions recognized under the law, offers no less than a promise to end adult guardianship as we know it.

So, what exactly is "supported decision-making?" Professor Diller explains:

 The support can take the form of accessible formats or technological assistance in communication.  Or it can take the form of "supported decision-making" arrangement, in which "supporters" assist individuals with decision-making in relationships of trust. In whatever form, the support is an appropriate accommodation that enables the individual to enjoy the right to legal capacity.

The author warns there is no single model for supported decision-making.  Ideally, the individual designates in advance his or her desired supporter, and the movement behind this approach believes this selection can be recognized even if the individual might not be found to have the requisite capacity to enter into a contract or to execute a formal power of attorney. 

In 2015, Texas became the first state in the U.S. to pass a supported decision-making statute, and the Texas statutory approach views this option as a better alternative for individuals who need assistance in making decisions about activities of daily living, but who are not considered to be "incapacitated" as that concept is defined in guardianship law.  The Texas statute contemplates an individual who can act voluntarily, in the absence of coercion or undue influence. Information about Texas' law is available here. 

In 2016, Delaware became the second state to enact legislation enabling the option of Supported Decision-Making, with Senate Bill 230.  

In 2012, the ABA Commission on Disability Rights and the ABA Commission on Law and Aging, working with U.S. government representatives, hosted a round table discussion on supported decision making for individuals with "intellectual disabilities."   The ABA captured a host of materials related to this discussion on this website.

In 2017, the ABA House of Delegates adopted a resolution on supported decision-making and endorsed its possible use as a less-restrictive alternative to guardianship, including use of this approach as grounds for termination of an existing guardianship and restoration of rights.   

Earlier this year, on February 15, 2018, the ABA hosted a webinar on "Supported Decision-Making as a Less Restrictive Alternative: What Judges Need to Know."  While the webinar appears to have been offered only as a one-time "live" option, perhaps a recording will become available in the near future.  Here's an ABA webpage providing details. 

My special thanks to Pennsylvania Elder Law Attorney Sally Schoffstall, who served as a panelist at the Dickinson Law event last week, for providing me with a copy of The Arc's information on the Texas Supported Decision-Making law, linked above. Additional thanks to Dickinson Law James Adams for photographing the conference! 

April 2, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Legal Practice/Practice Management, Programs/CLEs, Property Management, State Statutes/Regulations | Permalink | Comments (0)

Friday, March 30, 2018

Medically-Assisted Dying Advances in Hawaii

The Hawaii legislature has approved legislation to legalize Medical Aid-in-Dying, according to the New York Times. Doctor-Assisted Suicide Close to Becoming Law in Hawaii reports that the bill now goes to the Hawaii governor, who has indicated that he will sign the bill.  The bill contains safeguards similar to other medical aid-in-dying statutes, including

a requirement that two health care providers confirm a patient's diagnosis, prognosis, ability to make decisions and that they voluntarily made the request. A counselor also must determine that the patient is capable and does not appear to be suffering from a lack of treatment of depression.

The patient must make two oral requests for the life-ending medication, with a 20-day waiting period between each. They also must sign a written request witnessed by two people, one of whom can't be a relative.

The measure creates criminal penalties for anyone who tampers with a request or coerces a prescription request.

Assuming the Governor signs the bill, Hawaii will be the 6th state to have such a law, joining Washington, Oregon, Vermont, Colorado and California, along with the District of Columbia.  Montana, although without such a statute, has a state supreme court opinion addressing the issue.

March 30, 2018 in Advance Directives/End-of-Life, Consumer Information, Crimes, Current Affairs, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)

Monday, March 19, 2018

Med Students Learn to Talk About Dying

Kaiser Health News featured a story about teaching med students how to talk about death to patients and families. Oregon Medical Students Face Tough Test: Talking About Dying features a test administered to med students in Oregon. " OHSU officials say they’re the first medical students in the U.S. required to pass a tough new test in compassionate communication."

Compassionate communication test requires that the med students "[b]y graduation this spring ... be able to show that, in addition to clinical skills, they know how to admit a medical mistake, deliver a death notice and communicate effectively about other emotionally and ethically fraught issues."  The curriculum was revamped to incorporate "communication, ethics and professionalism" throughout.   Communication is required learning in all medical schools but the OSHU approach may be groundbreaking with the evaluation component.  

March 19, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Ethical Issues, Health Care/Long Term Care | Permalink | Comments (0)

Sunday, March 18, 2018

No Right To Try Law Yet

Two weeks ago we reported that the House of Representatives were scheduled to vote on the Right to Try Bill that had previously passed the Senate.  If you were betting that the House would also pass the bill, you would be .... wrongHouse Rejects Bill to Give Patients a ‘Right to Try’ Experimental Drugs explains the vote wasn't particularly close.  "The bill was considered under special fast-track procedures that required a two-thirds majority for passage, and it fell short. When the roll was called, 259 House members supported the bill, and 140 opposed it." Those that voted against the bill, the majority Democrats, were worried about patient harms, whether creating false hope or harming patients since the drugs wouldn't have gone through the rigorous FDA process. The article quotes one of the House leadership that the bill will be brought back for another vote, but even so there is no guarantee of passage. There are a number of opponents to the bill, including medical personnel and patient advocaates.  "[M]ore than 75 patient advocacy groups, including the lobbying arm of the American Cancer Society, opposed the bill. .. The American Medical Association said it “does not believe that the bill will substantially improve patient access to investigational therapies.” And the American Society of Clinical Oncology, representing cancer doctors, said the bill “could do more harm than good for patients with life-threatening illnesses” because it would remove the Food and Drug Administration from the evaluation of the risks and potential benefits of some treatments."

A House Committee will address the bill on March 19, according to a March 16, 2018 post from Bloomberg BNA Health Care Daily report so stay tuned.

March 18, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Federal Statutes/Regulations, Health Care/Long Term Care | Permalink | Comments (0)

Tuesday, March 13, 2018

Expanding the Right to Physician-Aided Dying?

The Washington Post recently ran an article about efforts underway by some folks to expand Oregon's physician-aided dying law to include those individuals who do not have terminal illnesses. In Oregon, pushing to give patients with degenerative diseases the right to die explains efforts to expand the scope of Oregon's law to cover those with degenerative diseases, such as "[p]eople with Alzheimer’s, Parkinson’s, Huntington’s, multiple sclerosis and a host of other degenerative diseases [who] are generally excluded from the Oregon law." Why? you might ask. "[B]ecause some degenerative diseases aren’t fatal. People die with Parkinson’s, for example, not because of it. Other diseases, such as advanced Alzheimer’s, rob people of the cognition they need to legally request the suicide medications."

The article notes that this effort isn't limited to just Oregon. In fact, there are "[r]elatively modest drives ... afoot in Washington state and California, where organizations have launched education campaigns on how people can fill out instructions for future caregivers to withhold food and drink, thereby carrying out an option that is legal to anybody: death by starvation and dehydration. (It is often referred to as the “voluntarily stopping eating and drinking” method.)"

Interestingly, the article reports that not all in the right to die movement are in favor of broadening the law.  In fact "groups such as Compassion & Choices, the nation’s largest right-to-die organization, and the Death With Dignity National Center, a main author of the original law, have little appetite for widening access to lethal drugs in the states where medically assisted suicide already is legal."

These initiatives aren't just limited to the U.S. The story reports in Canada The Quebec "provincial government is studying the possibility of legalizing euthanasia for Alzheimer’s patients. Unlike medically assisted suicide, a medical doctor would administer the fatal dose via injection. A survey in September found that 91 percent of the Canadian province’s medical caregivers support the idea."

The Oregon legislature has taken the first step,  the passage last month of legislation to investigate "how to improve the process of creating and carrying out advance directives. Gov. Kate Brown (D) is expected to sign it."

The article also reminds us of the Harris case where Mrs. Harris, with an advance directive, was spoon fed by the facility where she resided.  There have been a number of folks requesting language added to their advance directives to avoid the spoon-feeding issue according to the attorney for Mr. Harris.

March 13, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (1)

House to Vote on Right To Try Bill

We have previously blogged about right to try laws and the bill making its way through Congress. The House of Representatives is scheduled to vote on the bill today according to the March 12, 2018 Bloomberg's Health Care Daily Report (subscription required). The Report explains

The bill set to be voted on in the House narrowed the Senate-passed version’s definition of who could seek unapproved drugs to “strike the right balance for patients and their safety,” Reps. Greg Walden (R-Ore.), chairman of the House Energy and Commerce Committee, and Michael Burgess (R-Texas), head of the panel’s health subcommittee, said in a joint statement.

If passed, the Senate will have to vote again on the measure or, less likely, form a conference committee to work out the differences, according to a statement from House Majority Leader Rep. Kevin McCarthy (R-Calif.).

I'll report back once we know more.

March 13, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Federal Statutes/Regulations, Health Care/Long Term Care | Permalink | Comments (0)

Thursday, March 8, 2018

Young Blood for Anti-Aging?

The subject of this story caught me off guard, having not contemplated it.  Stat ran the story, How a society gala was used to sell young-blood transfusions to baby boomers desperate to cheat death.

The story focuses on a luncheon event in south Florida where audience members were pitched on "[p]aying to participate in a soon-to-launch clinical trial testing transfusions of young blood [which] “offers the greatest potential for everyone in this room to add a lot of healthy years to their life... 'Not only do you get to potentially live longer … but you’re going to be healthier. And some of the chronic problems you have now may disappear.'”  Stat had a number of medical experts review the materials for the clinical trial "and all sharply criticized the study’s marketing, design, and scientific rationale."  Although the final price has yet to be determined, one suggested cost for the treatment was over a quarter of a million dollars.

The article discusses what is involved in clinical trials, other trials with similar goals and general reactions to the proposal.  It is a fascinating article.  It can be used as a jumping off point for a discussion about ageism.

 

 

March 8, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Federal Statutes/Regulations, Health Care/Long Term Care | Permalink | Comments (0)

Monday, March 5, 2018

Surgery Late in Life?

Kaiser Health News ran the story, Never Too Late To Operate? Surgery Near End Of Life Is Common, Costly that opens with this startling statistic: "Nearly 1 in 3 Medicare patients undergo an operation in their final year of life." Several paragraphs into the story the quote is repeated, but with this additional information: "[n]early 1 in 3 Medicare patients undergo an operation in the year before they die, even though the evidence shows that many are more likely to be harmed than to benefit from it."

So why does this happen? According to the article, there are financial incentives plus we are dealing with a "medical culture" where "patients and doctors are reluctant to talk about how surgical interventions should be prescribed more judiciously.... "  The article discusses several surveys regarding surgeries in the older population with the benefits and burdens from such surgeries.  As well, there are significant implications for elders undergoing surgery, including longer recovery time and less tolerance with anesthesia.

Thinking through medical treatment options takes time. One tool being developed by "[m]any hospitals and health systems is ... “decision aids,” easy-to-understand written materials and videos to help patients make more informed medical decisions, giving them time to develop more realistic expectations." Another approach discussed in the article is a move away from the use of statistics and instead have the focus on narratives where the "doctors should lay out the best, worst and most likely outcomes."  If the best cases scenario resulting from the medical intervention isn't something that the patient finds acceptable, then that's a big indicator that the patient should not undergo the medical intervention.

Interesting ideas!

March 5, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Federal Statutes/Regulations, Health Care/Long Term Care, Medicare | Permalink | Comments (0)

Monday, February 12, 2018

Kaiser Health Offers Q & A on "Living Well with Dementia" on Tuesday, Feb 13

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.

February 12, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Science | Permalink | Comments (0)

Monday, January 29, 2018

California Healthline Reports: Doctor Groups Dropping Opposition to Aid in Dying for Terminally Ill

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.

 

January 29, 2018 in Advance Directives/End-of-Life, Ethical Issues, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Thursday, January 25, 2018

Netherlands: Examining Physician's Actions in Euthanasia Death of 74-Year Old Woman with Dementia

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?   

January 25, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, International | Permalink | Comments (0)

Tuesday, January 23, 2018

Physician-Assisted Death: Ethical Debates, Professional Challenges, Societal Questions

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 “Physician-Assisted Death: Scanning the Landscape and Potential Approaches, 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. . . .

January 23, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Ethical Issues, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)

Sunday, January 21, 2018

Dementia Advance Directive?

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.

Interesting.

 

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

Choice and Customer Service in Senior Living

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:

  1. 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.
  2. 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.  
  3. 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

As The Oldest Generation Ages in Japan . . .

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.

December 8, 2017 in Advance Directives/End-of-Life, Current Affairs, Housing, International | Permalink | Comments (0)

Thursday, December 7, 2017

Planning for Workshop on Physician-Aided Death

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.

December 7, 2017 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care, Programs/CLEs, State Statutes/Regulations | Permalink | Comments (0)

Wednesday, December 6, 2017

When a Tattoo is an Advance Directive?

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.

 

 

 

December 6, 2017 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (1)

Friday, November 10, 2017

Advance Directives and Spoon Feeding

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.

November 10, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (1)

Thursday, October 26, 2017

Oregon-Just Click for POLST

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.

October 26, 2017 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)

Friday, October 20, 2017

Health Affairs Blog: Hospice Doc Leads Us on a Journey through the Valley of the Shadow of Death

I recommend a fascinating piece on the Health Affairs Blog by Joanne Lynn, who among her many callings is a "hospice and long-term care physician. " You don't see that as a specialization very often!

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.  

October 20, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Ethical Issues, Health Care/Long Term Care | Permalink | Comments (0)