Wednesday, September 21, 2016

The Stanford Letter Project

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:

  1. Acknowledge the important people in your life...
  2. Remember treasured moments from your life....
  3. Apologize to those you love if you hurt them....
  4. Forgive those who love you if they have hurt you...
  5. Express your gratitude for all the love and care you have received....
  6. Tell your friends and family how much you love them... [and]
  7. Take a moment to say "goodbye.

Check out the website.

September 21, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care | Permalink | Comments (0)

Monday, September 19, 2016

Upcoming Conference to Focus on Dispute Resolution in the Face of "Medical Futility"

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.

Speakers include: 

  • 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

Patients with Dementia, Pain & Hospice Care

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.

The full article is available here or as a pdf here.

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!

September 14, 2016 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care | Permalink | Comments (0)

Monday, September 5, 2016

"Mission Creep" in End of Life Care?

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."

September 5, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care | Permalink | Comments (0)

Friday, August 19, 2016

Want to Laugh? Read "Old Age: A Beginner's Guide," by Michael Kinsley

I'm always just a bit suspicious of books that promise to make me laugh.  I think it is because I like to be surprised by humorous moments, rather than feel duty-bound to chuckle, guffaw or giggle.  

Nonetheless, I succumbed to the promise in the blurb for Michael Kinsley's 2016 book, Old Age: A Beginner's Guide, that it was a "surprisingly cheerful book ... and a frequently funny account of one man's journey to the finish line."  

And I'm glad I did.  I did indeed laugh, and at the most surprising of moments, as when he described the need to avoid the doors of his refrigerator because of the magnets that might interfere with the technology in his brain used to keep symptom of Parkinson's Disease at bay.  He has the knack of making wry observations about his own mortal state to think broadly about what it is for all of us to age. I can see the short essays that make up this book being useful in a class on elder law or estate planning.  

His words are perhaps most poignantly relevant to boomers.  For example, on a goal of living longer, he writes:

Even before you're dead, you may want to ask yourself whether this is what you really want.  Is being alive all that desirable if you're alive only in the technical sense?  Millions of boomers are watching their parents fade until they are no longer there. As they approach their seventies, they start observing their own peer group losing their collective marbles, one at a time. And they  reasonably conclude that the real competition should not be about longevity. It should be about cognition.

But he doesn't stop there, exploring other, potentially more important goals for the competitive boomer generation to consider.  

This is a short, deep book.  And I recommend it, not least of all because it gives readers welcome opportunities to smile. 

August 19, 2016 in Advance Directives/End-of-Life, Books, Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Science, Statistics | Permalink | Comments (0)

Monday, August 1, 2016

New Scholarship: Can Adults, including Older Adults, Give Advance Consent to Sexual Relations?

As some readers may recall, last year we reported on the emotionally fraught criminal trial in Iowa for a former state legislator, who was ultimately acquitted of sexual assault of his wife.  The allegations arose in the context of alleged sexual relations with his wife after she was admitted to a nursing home.  

Assistant Professor of Law Alexander A. Boni-Saenz, from Chicago Kent College of Law, has drawn upon this case and others to further explore his proposals for "advance directives" whereby adults could specify their decisions in advance of incapacity.  Alex's latest article, Sexual Advance Directives, forthcoming in the Alabama Law Review, is available on SSRN here.   From the abstract:

Can one consent to sex in advance? Scholars have neglected the temporal dimension of sexual consent, and this theoretical gap has significant practical implications. With the aging of the population, more and more people will be living for extended periods of time with cognitive impairments that deprive them of the legal capacity to consent to sex. However, they may still manifest sexual desire, so consenting prospectively to sex in this context serves several purposes. These include protecting long-term sexual partners from prosecution by the state, ensuring sexually fulfilled lives for their future disabled selves, or preserving important sexual identities or relationships. The law currently provides a device for prospective decision-making in the face of incapacity: the advance directive.

 

The central claim of this article is that the law should recognize sexual advance directives. In other words, people facing both chronic conditions that threaten their legal capacity to make decisions and institutional care that threatens sexual self-determination should be able to consent prospectively to sex or empower an agent to make decisions about sex on their behalf. To justify this claim, the Article introduces a novel theory of sexual consent—the consensus of consents—that diffuses the longstanding philosophical debates over whether advance directives should be legally enforceable. With this normative foundation, the Article then draws on insights from criminal law, fiduciary law, and the law of wills to fashion a workable regime of sexual advance directives that adequately protects individuals from the risk of sexual abuse. 

Alex is a thoughtful writer on challenging topics, often looking at the intersection of health care, estate law and elder law planning.

August 1, 2016 in Advance Directives/End-of-Life, Cognitive Impairment, Crimes, Dementia/Alzheimer’s, Estates and Trusts, Ethical Issues | Permalink | Comments (1)

Monday, July 25, 2016

Who Spends Most on End of Life Care?

The answer might surprise you.  It turns out that the older the person, the less the person spends Kaiser Family Foundation reports in a recently released Medicare data note. Medicare Spending at the End of Life: A Snapshot of Beneficiaries Who Died in 2014 and the Cost of Their Care was published July 14, 2016.

Of the 2.6 million people who died in the U.S. in 2014, 2.1 million, or eight out of 10, were people on Medicare, making Medicare the largest insurer of medical care provided at the end of life. Spending on Medicare beneficiaries in their last year of life accounts for about 25% of total Medicare spending on beneficiaries age 65 or older. The fact that a disproportionate share of Medicare spending goes to beneficiaries at the end of life is not surprising given that many have serious illnesses or multiple chronic conditions and often use costly services, including inpatient hospitalizations, post-acute care, and hospice, in the year leading up to their death. (footnotes omitted)

The authors examine the data on a number of points, with explanations and corresponding charts. Among their findings

Our analysis shows that Medicare per capita spending for beneficiaries in traditional Medicare who died at some point in 2014 was substantially higher than for those who lived the entire year, as might be expected. It also shows that Medicare per capita spending among beneficiaries over age 65 who die in a given year declines steadily with age. Per capita spending for inpatient services is lower among decedents in their eighties, nineties, and older than for decedents in their late sixties and seventies, while spending is higher for hospice care among older decedents. These results suggest that providers, patients, and their families may be inclined to be more aggressive in treating younger seniors compared to older seniors, perhaps because there is a greater expectation for positive outcomes among those with a longer life expectancy, even those who are seriously ill.

In addition, we find that total spending on people who die in a given year accounts for a relatively small and declining share of traditional Medicare spending. This reduction is likely due to a combination of factors, including: growth in the number of traditional Medicare beneficiaries overall as the baby boom generation ages on to Medicare, which means a younger, healthier beneficiary population, on average; gains in life expectancy, which means beneficiaries are living longer and dying at older ages; lower average per capita spending on older decedents compared to younger decedents; slower growth in the rate of annual per capita spending for decedents than survivors, and a slight decline between 2000 and 2014 in the share of beneficiaries in traditional Medicare who died at some point in each year.

The report is also available as a pdf here.

July 25, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Federal Statutes/Regulations, Health Care/Long Term Care, Medicare | Permalink | Comments (0)

Thursday, July 21, 2016

Progress on End of Life Care?

The National Academy of Medicine (NAM) held a meeting in late May, 2016 to update progress since the release of the major report on Dying in America. NAM "hosted “Assessing Progress in End-of-Life and Serious Illness Care,” a private working meeting for stakeholders to assess progress since the September 2014 release of Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life."  The meeting recap is available here. The recap includes transcripts of remarks and discussions as well as slides if used by presenters. The focus of the day was on 5 topics that included "(1) delivery of person-centered, family-oriented care; (2) clinician-patient communication and advance care planning; (3) professional education and engagement; (4) policies and payment systems; and (5) public education and engagement."  After breakout sessions,"participants generated 3-5 top priority action items in each area .... [which] will inform the strategic planning of a new Roundtable on Quality Care for People with Serious Illness at the National Academies of Sciences, Engineering, and Medicine (the Academies)."

July 21, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care | Permalink | Comments (0)

Wednesday, July 20, 2016

More on Physician-Aided Dying

I wanted to make sure you didn't miss these developments.

First, Colorado voters in November may see a ballot initiative on physician-aided dying.  Proponents are collecting signatures according to an article in the Denver Post, Right-to-die initiative headed for Colorado’s November ballot. It's not a slam-dunk however. The article notes that there is opposition to the proponents efforts to place the initiative on the ballot.  Proposed legislation failed previously. Stay tuned.

Second, in case you missed it, on June 30, 2016, the New Mexico Supreme Court issued its ruling in Morris v. Brandenburg,  a physician-aided dying case that has been making its way through the appeals process.  The court held "we decline to hold that there is an absolute and fundamental constitutional right to a physician’s aid in dying and conclude that Section 30-2-4 is not  unconstitutional on its face or as applied to Petitioners in this case." The court relied heavily on the U.S. Supreme Court opinion in Washington v. Glucksberg and found no specific reasons under the NM Constitution to depart from that precedent since physician-aided dying is not a fundamental right.  Here's an excerpt from the opinion:

New Mexico, like the rest of the nation, has historically sought to deter suicides and to punish those who assist with suicide, with limited exceptions in the HCDA and the Pain Relief Act. However, these exceptions occurred as a result of debates in the legislative and executive branches of government, and only because of carefully drafted definitions and safeguards, which incidentally are consistent with the safeguards urged by Petitioners. Numerous examples of such definitions and safeguards exist in the UHCDA. In addition to those previously identified in paragraph 35 of this opinion, the following reflect other safeguards relevant to our analysis... These and other provisions of the UHCDA further many of the government interests recognized by the Glucksberg Court as unquestionably legitimate, and which made Washington’s ban on physician aid in dying reasonably related to their promotion and protection…Indeed, if such exceptions and carve-outs to the historical national public policy of deterring suicide properly exist, they are certainly borne of the legislature and not the judiciary.

A summary of the opinion appeared in the July 13, 2016 eBulletin (full disclosure-I'm one of the editors).

July 20, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Monday, July 11, 2016

End of Life Care-Does the Illness Make a Difference?

JAMA Internal Medicine ran an article about a study concerning quality of care in end of life, looking specifically at the illnesses. Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses was published on June 26, 2016.  According to the abstract, "[e]fforts to improve end-of-life care have focused primarily on patients with cancer. High-quality end-of-life care is also critical for patients with other illnesses." The authors wanted "[t]o compare patterns of end-of-life care and family-rated quality of care for patients dying with different serious illnesses."  The study offers several findings, including:

In a large national cohort of nearly all patients dying in VA inpatient facilities, we observed important differences in the end-of-life care received by individuals with different illnesses. Overall, we found that diagnosis was significantly associated with the quality of end-of-life care as measured both by family surveys and by several established measures of quality of end-of-life care. Patients with end-organ failure and frailty generally received lower-quality end-of-life care than did patients with cancer or dementia. (citations omitted).

After discussing their findings, the authors conclude

While there is room for improvement in end-of-life care across all diagnoses, family-reported quality of end-of-life care was significantly better for patients with cancer and those with dementia than for patients with ESRD, cardiopulmonary failure, or frailty. This quality advantage was mediated by palliative care consultation, do-not-resuscitate orders, and setting of death. Increasing access to palliative care and increasing the rates of goals of care discussions that address code status and preferred setting of death, particularly for patients with end-organ failure and frailty, may improve the quality of end-of-life care for Americans dying with these conditions.

The article is free and is available here.

July 11, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care | Permalink | Comments (0)

Thursday, June 23, 2016

Challenge to California's Aid-in-Dying Law

I don't think we should be surprised to learn that a lawsuit has been filed, challenging California's aid-in-dying law that became effective earlier this month. The LA Times reported on June 9, 2016 that a suit had been filed.  Opponents Sue to Overturn California's New Aid-in-Dying Law explains that two organizations and some individual doctors filed the suit and claim that the law is unconstitutional,"argu[ing] that California’s law is a civil rights violation, stripping terminally ill patients of protections afforded to other Californians." The article notes that the judge assigned to the case denied a TRO but a hearing on the plaintiffs' motion for a preliminary injunction will be held in late June. 

 

June 23, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care | Permalink | Comments (0)

Friday, June 17, 2016

Bifocal: Examining Less Restrictive Alternatives to Guardianships

The ABA's Bifocal publication includes a new resource guide designed to help lawyers identify and help to implement decision-making options for persons with disabilities that are less restrictive than guardianships.  

The "PRACTICAL Tool," with the first word intended to serve as an acronym for nine steps that a lawyer can use to identify legal and practical approaches, includes:

  • Presume guardianship is not needed
  • clearly identify the Reasons for concern;
  • Ask if a triggering concern may be temporary;
  • determining whether the concerns can be addressed by Community resources;
  • ask if the person already has a Team to help make decisions;
  • Identify the person's abilities;
  • screen for potential Challenges;
  • Appoint a legal support consistent with the person's values; and
  • Limit any necessary guardianship petition. 

For more, read Resource for Lawyers Targets Options Less Restrictive than Guardianship, Bifocal, the Journal of the ABA Commission on Law and Aging, Volume 37, Issue 5. 

June 17, 2016 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Ethical Issues, State Statutes/Regulations | Permalink | Comments (0)

Tuesday, June 14, 2016

The Couple Writes, "We apologize for the problem, and possible trauma, that our action has caused."

We often write here about end-of-life decisions.  But, recently a friend shared with me one of the more remarkable accounts of decision-making I have seen, by a couple in their 80s.  

I'm not even going to attempt to summarize this story, but I do recommend reading all the way to the end of the Gainesville Sun's report on "After nearly 59 years of marriage, Joe and Jean Subers die together."    

June 14, 2016 in Advance Directives/End-of-Life, Current Affairs, Statistics | Permalink | Comments (0)

Tuesday, May 31, 2016

American Society on Aging Call for Proposals

The annual American Society on Aging (ASA) conference is scheduled for March 20-24, 2017 in Chicago. The planning committee is now accepting proposals to present at the conference.  For more information or to submit a proposal, click here. The deadline for submitting a proposal is June 30, 2017.

May 31, 2016 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, Programs/CLEs | Permalink | Comments (0)

Thursday, May 26, 2016

End of Life Prognosis: Is the Glass Half-Full or Half-Empty?

We all know folks who are the glass half-full type (optimist), as well as the glass half-empty type (pessimist).  When one talks to those folks, how those folks interpret what they hear depends on what "glass type" they are.   The Journal of the American Medical Association (JAMA) ran a story about a study, Prevalence of and Factors Related to Discordance About Prognosis Between Physicians and Surrogate Decision Makers of Critically Ill Patients.  According to the abstract, "[m]isperceptions about prognosis by individuals making decisions for incapacitated critically ill patients (surrogates) are common and often attributed to poor comprehension of medical information."

The authors noted how important it is for the health care surrogate to have information in order to make a health care decision for the patient. But, according to the study,

Numerous studies over the last 3 decades indicate that surrogates of patients with advanced illness often have optimistic expectations about prognosis. This is problematic because optimistic expectations are associated with more use of invasive treatments in dying patients and delayed integration of palliative care. Clinicians cite unrealistic expectations by surrogates as one of the most important barriers to high-quality end-of-life care in seriously ill patients.(citations omitted).  

The authors look at some of the reasons for this disparity in viewpoint (including the lack of medical knowledge by surrogates). Here is one example of their findings regarding the disparity of views:

Physician-surrogate discordance about prognosis occurred in 122 of 229 instances (53%; 95% CI, 46.8%-59.7%). Among the 229 surrogates participating in the study, 98 (43%) were more optimistic than physicians and 24 (10%) were more pessimistic. Sixty-five instances (28%) were related to a combination of misunderstandings by surrogates and differences in belief between the physician and surrogate about the patient’s prognosis; 38 (17%) were related to misunderstanding only; 7 (3%) were related to different beliefs; and data were missing for 12.

The authors explore the reasons for the surrogates' glass half-full view and learned that the surrogates felt that a positive attitude:  "would improve the patient’s outcomes or protect themselves from emotional distress"; was justified because they knew the patient better than the doctor, including knowing if the patient were a strong person; and/or was based on their religious beliefs.

The study also explored the glass half-empty views of surrogates.  The study authors concluded that "[a]mong critically ill patients receiving care in ICUs, discordant expectations about prognosis were common betwTeen patients’ physicians and surrogate decision makers and were related to both misunderstandings by surrogates about physicians’ assessments of patients’ prognoses and differences in beliefs about patients’ prognoses."

The article is available here for free

May 26, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care | Permalink | Comments (0)

Tuesday, May 3, 2016

Chronically Critically Ill and Stable

The New York Times ran an article by a doctor, When the Patient Won’t Ever Get Better, which illustrates a difficult scenario for patients and families.  A patient, doing well, is hospitalized for some condition, surgery may occur and although successful, subsequently the patient develops one health problem after another, and will never recover to her condition prior to the hospitalization.  Detailing the ups and downs of one patient, the doctor describes the patient "[a]nd then, things stopped getting better. Time slowed. There she was – neither dead nor truly alive – stuck, it seemed, in limbo."  The patient declined again, more infections, use of a ventilator, etc. and then "[w]ith ... [the] constellation of ventilation dependence, infections and delirium, she had what doctors call 'chronic critical illness.'”

According to the author, this isn't that unusual a story.

[T]here are about 100,000 chronically critically ill patients in the United States at any one time, and with an aging population and improving medical technologies, this number is only expected to grow. The outcomes of these patients are staggeringly poor. Half of the chronically critically ill will die within a year, and only around 10 percent will ever return to independent life at home.

We can all imagine the scenario where our parent has a health crisis and all we want to know is whether she survived and is she "stable."  After time passes, we learn that she is stable, but is chronically critically ill and won't improve.  Here's how the author describes the situation

In the early moments of critical illness, the choices seem relatively simple, the stakes high – you live or you die. But the chronically critically ill inhabit a kind of in-between purgatory state, all uncertainty and lingering. How do we explain this to families just as they breathe a sigh of relief that their loved one hasn’t died? Should we use the words “chronic critical illness”? Would it change any decisions if we were to do so? .... 

Perhaps this reality would be a good situation to use to discuss with our students whether they can draft language in an advance directive to deal with these situations.

May 3, 2016 in Advance Directives/End-of-Life, Cognitive Impairment, Current Affairs, Health Care/Long Term Care | Permalink | Comments (0)

Wednesday, April 27, 2016

Physician-Aided Death Legislation and the Impact on the Medical Profession

JAMA's Journal of Internal Medicine ran an article in the April issue, The Challenge of New Legislation on Physician-Assisted Death .  From the legal profession, we know how these laws work. But from the medical profession, according to the article, doctors need to think about how to incorporate this into their practices.   Here is a sample of the article:

By the end of 2016, more than 80 million people in the United States and Canada will live in a jurisdiction allowing physician-assisted death. As such, this practice can no longer be considered a quirky experiment in a few states. The North American experience with physician-assisted death began in 1994, when voters in Oregon approved a ballot measure, the Death With Dignity Act, allowing a physician to prescribe a lethal dose of a medication that a patient voluntarily self-administers. Oregon stood alone for 14 years until Washington (2008), Vermont (2013), and now California (2015) approved similar laws. As of January 2016, the effective date of the California law, known as the End of Life Option Act, is uncertain. These laws are in general very similar, with safeguards that include requirements for a waiting period and that eligible patients be mentally competent, not mentally ill, and have a life expectancy of less than 6 months. In 2009, the Montana Supreme Court removed prohibitions against physician-assisted death for competent patients. There are no reporting requirements in Montana, so little is known about the actual practice of physician-assisted death in that state. In 2015, the Canadian Supreme Court unanimously reversed a federal law that prohibited physician-assisted death and gave the government until June 2016 to establish mechanisms for access to such assistance. (citations omitted)

A subscription is required to read the entire article.

April 27, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)

Friday, April 22, 2016

Do We Ask Too Much of Doctors as Advisors on Death?

This semester, I took a poll with  my students in Elder Law, asking their views about right to die issues.  This year, perhaps more than in past years, the poll came out strongly in favor of honoring clear, adequately informed decisions of individuals to end their lives.  Of course, we discussed the many grey areas, and the impact of high profile cases, such as Brittany Maynard, on current thought.  We debated both the question of affirmative actions to die, particularly in states that permit physician assistance, and the potential to assume -- and or even over-assume -- that a completed "living will" is a choice to reject so-called extraordinary life-saving measures.   Just because we are now more likely to support personal choices to die, does not mean we should assume that all accept a nearer end.

Relevant to this discussion  is a Washington Post essay by Boston-based internal medicine and primary care resident Ravi Parikh on When a Doctor and Patient Disagree About Care at the End of Life. He describes his own experiences as he begins his career:

Not long ago, a frail-looking elderly patient appeared at my cardiac health clinic with a file full of hospitalizations stemming from a heart attack years before. He’d had three coronary stents put in, had had heart bypass surgery and was unable to walk for more than a block due to chest pain. I saw that a previous doctor had written “DNR” — do not resuscitate — in his chart, so I asked him to confirm his wishes.

 

No, he said, to my surprise. He actually wanted to be a “full code” — meaning that chest compressions, shocks and intubation were to be used if necessary to keep him alive.

 

I was taken aback....

This experience pushed him to rethink his approach to the topic, which in turn led him to The Conversation Project website.  His exploration concludes with the thought that "Once we listen enough to learn, maybe those 'goals of care' discussions will start focusing on the goals of the patient, not the doctor."

Our thanks to George Washington Law's Naomi Cahn for sending this piece; she and frequent writing colleague Amy Ziettlow have a thematically related piece for a recent University of Illinois  symposium on "Law, Religion and the Family Unit After Hobby Lobby: A Tribute to Professor Harry Krause." 

April 22, 2016 in Advance Directives/End-of-Life, Consumer Information, Ethical Issues | Permalink | Comments (0)

Wednesday, April 20, 2016

Physician-aided Dying in Canada

Prime Minister Justin Trudeau was the focus of an article in the New York Times last week on physician-aided dying in Canada. Justin Trudeau Seeks to Legalize Assisted Suicide in Canada reports that a proposed law was introduced that would allow physician-aided dying  "for Canadian residents and citizens who have "a “serious and incurable illness,” which has brought them 'enduring physical or psychological suffering.'"

Under Canada’s proposed law, people who have a serious medical condition and want to die will be able to commit suicide with medication provided by their doctors or have a doctor or nurse practitioner administer the dose for them. Family members and friends will be allowed to assist patients with their death, and social workers and pharmacists will be permitted to participate in the process.

The legislation follows a ruling by the Canadian Supreme Court which eliminated a criminal ban on physician-aided dying. A copy of that decision is available here.

One striking difference in the proposed legislation in Canada compared to those states in the U.S. where physician-aided dying is legal is that "a doctor or nurse practitioner [may] administer the dose for them. Family members and friends will be allowed to assist patients with their death, and social workers and pharmacists will be permitted to participate in the process."

Not all in Canada are in favor of the legislation. CBC Canada ran a story,  Religious groups react to physician-assisted dying bill LIVE where a number of groups stated concerns about the legislation.  The video is available here.

If any of our readers are from Canada, we would be very interested in hearing more about the discussion in Canada on this proposal.

April 20, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Health Care/Long Term Care, International | Permalink | Comments (0)

Friday, April 15, 2016

What's the Connection Between "Living Wills" for Banks vs Humans?

Lately, I've been hearing and seeing the phrase "living wills" in mainstream news sources such as the New York Times, but at first the context was confusing to me because the media were speaking and writing about Big Banks, not humans. So, how did it come about that following the 2008 financial crisis, regulators started requiring large financial institutions to have "living wills?"

The Wall Street Journal explains in What You Need to Know About Living Wills [in the context of Big Banks]:

A living will is a document from a financial firm that describes how it would go through bankruptcy without causing a broader economic panic or needing a bailout from taxpayers. The largest U.S. banks have filed several versions of them since the 2010 Dodd-Frank law, which ​required living wills from financial firms ​that were judged to pose a potential risk to the broader economy. The documents are also known as resolution plans. “Resolution” is regulatory parlance for dealing with a failing financial firm.  Living wills are separate from other regulatory requirements, such as annual “stress tests” that measure whether could banks survive a severe recession.

I've not yet determined who first came up with "living wills" to describe what Dodd-Frank, at 12 U.S.C. Section 5361(d), refers to as "resolution plans." Without accurate, full disclosure, addressing all aspects of the financial institution's operations, such plans -- by any name -- seem unlikely to achieve the goal of greater market stability.  As another WSJ writer points out, the utility of Big Banks' living wills comes if not just regulators, but the Bank executives, are paying attention:

The point of the living wills, like the stress tests, is to sit banks down and make them comb through their businesses in excruciating detail, with a focus on grim aspects like liquidity crunches and operational risks in bankruptcy. A useful result of the living wills is that, if they're done correctly, they give regulators a good overall picture of how a bank works, how money flows between its parts, what its pressure points are, and how it responds to crisis. But a much more important result is that, if they're done correctly, they give bankers themselves that same overall picture: They force a bank's executives and directors to understand the workings of the bank in a detailed and comprehensive way. And if they're done incorrectly, that's useful too: They let the regulators and bankers know what they don't know.   

The full article on this point is titled, with nice irony, Living Wills Make Banks Think About Death.  There, a least, is one similarity in living wills for humans and banks.  

April 15, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Estates and Trusts, Ethical Issues, Federal Cases | Permalink | Comments (2)