Thursday, May 26, 2016
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
Tuesday, May 3, 2016
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.
Wednesday, April 27, 2016
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.
Friday, April 22, 2016
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."
Wednesday, April 20, 2016
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.
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.
Friday, April 15, 2016
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.
Thursday, March 31, 2016
A friend sent me several recent resources about elders with dementia. The Hospice and Nursing Home Blog published a video on Doctors’ End-of-Life Language, Impact on Patient-Caregiver Decisions. The Agency on Healthcare Research and Quality published Nonpharmacologic Interventions for Agitation and Aggression in Dementia. The pdf of the article is available here. Finally, in February, 2016, this article, Palliative care of patients with advanced dementia was published in UpToDate (which is "an evidence-based, physician-authored clinical decision support resource....")
Thanks to my friend Pamela Burdett for sending me the links to these 3 publications.
Tuesday, March 29, 2016
Roz Chast's memoir of life with her parents as they aged, Can't We Talk About Something More Pleasant?, uses humor to explore the complicated issues that can arise when aging parents and their adult children try to address physical frailty and financial complexities in the "third age" of life. Another look, equally realistic and also ruefully humorous, comes from William Power, writing for the Wall Street Journal in "The Difficult, Delicate Untangling of Our Parents' Financial Lives." Thanks to the WSJ for making this an unlocked article for digital access!
Power begins with that ever-humbling attempt to use "help lines" to solve problems by phone:
“No, no, no, don’t transfer me to her again,” pleads my wife. It is a typically frustrating moment in our family crisis, one that many grown children will have to face, ready or not: We are people in our 50s who are unraveling the finances of parents who can no longer do it themselves.
My wife, Julie, is on the phone with the company where her 82-year-old dad had once worked, trying to change the direct deposit of his pension checks to a bank closer to the assisted-living home where he and his wife now live, which is near us in Pennsylvania. Again and again, she is transferred to the person in charge, “Rose.” And every time, the same recording: “This number has been disconnected.”
Power's account is punctuated by practical advice for others, including the importance of teamwork, involving both family members and others, in tackling the issues, as well as the use of key document-based tools, including Powers of Attorney, or as he stresses, "Repeat after Me: POA, POA, POA."
My thanks to Amy Bartylla, a long-time friend, for this article referral.
March 29, 2016 in Advance Directives/End-of-Life, Consumer Information, Dementia/Alzheimer’s, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, Property Management | Permalink | Comments (0)
Tuesday, February 23, 2016
Here are three recent articles of note on Physician-Aided Dying (PAD) that might be useful in your classes.
First, the Journal of the American Medical Association (JAMA) Psychiatry ran at article on February 10, 2016, Physician-Assisted Death for Patients With Mental Disorders—Reasons for Concern. As the article opens:
Physician assistance to help people end their lives—by prescribing or directly administering medication—is now legal in some form in 4 American states, Canada, and 4 European countries. In the United States, laws permitting physicians to write prescriptions for medications intended to end patients’ lives are limited to patients with terminal conditions and preclude physician administration of the medication. However, other countries, including the Netherlands, allow direct physician involvement and have expanded the criteria to include patients with irremediable suffering, whatever the cause. Therefore, the door has been opened for people whose suffering is primarily due to mental disorders to seek assistance in dying. (citations omitted)
Next in the same volume is the article about the study referenced in the first article: Euthanasia and Assisted Suicide of Patients With Psychiatric Disorders in the Netherlands 2011 to 2014. The full article is free, and the tables and references are also available in the online version. The authors conclude
Despite some limitations, an important strength of our study is that we examined reports of actual psychiatric EAS cases across an entire jurisdiction, rather than asking physicians to recollect their experiences or opinions. The results show that the patients receiving EAS are mostly women and of diverse ages, with various chronic psychiatric conditions, accompanied by personality disorders, significant physical problems, and social isolation or loneliness. Refusals of treatment were common, requiring challenging physician judgments of futility. Perhaps reflecting the complexity of such situations, the physicians performing EAS generally sought multiple consultations (but not always), and disagreement among physicians—especially regarding competence and futility—was not unusual. Despite these complexities, a significant number of physicians performing EAS were new to the patients. We conclude that the practice of EAS for psychiatric disorders involves complicated, suffering patients whose requests for EAS often require considerable physician judgment. The retrospective oversight system in the Netherlands generally defers to the judgments of the physicians who perform and report EAS. Whether the system provides sufficient regulatory oversight remains an open question that will require further study.
The New York Times ran an article about the study on February 10, 2016. Assisted Suicide Study Questions Its Use for Mentally Ill notes that
A new study of doctor-assisted death for people with mental disorders raises questions about the practice, finding that in more than half of approved cases, people declined treatment that could have helped, and that many cited loneliness as an important reason for wanting to die. The study, of cases in the Netherlands, should raise concerns for other countries debating where to draw the line when it comes to people’s right to die,
Discussing the findings from the study, the NY Times article notes that that it
finds that cases of doctor-assisted death for psychiatric reasons were not at all clear-cut, even in the Netherlands, the country with the longest tradition of carefully evaluating such end-of-life choices. People who got assistance to die often sought help from doctors they had not seen before, and many used what the study called a “mobile end-of-life clinic” — a nurse and a doctor, funded by a local euthanasia advocacy organization.
Good sources for your classes and for students writing papers on the topic!
Monday, February 22, 2016
A John A. Hartford Foundation-sponsored study released this month uses Medicare data to examine health care for older Americans, with a self-described "emphasis on the patient's perspective." Both the methodology and the conclusions are intriguing. The researchers report:
For the first time, we measure the intensity of care in terms of how many days per year the average Medicare beneficiary is in contact with the health care system. We can see that beneficiaries in some regions see twice as many unique clinicians for ambulatory care than in others. We also can see in which regions beneficiaries are more likely than not to have a primary care physician as their predominant provider of care.
We also examine the adoption of new evidence-based practices to show that, while some regions showed substantial progress, others still fall short. For example, in some regions, fewer seniors are being prescribed inappropriate high-risk medications, and in others, thirty-day readmission rates are falling. Yet screening tests for prostate cancer and breast cancer among beneficiaries 75 and older remain unnecessarily high, and the data in this report suggest that we are still waiting too long to refer patients to hospice care.
On the one hand, the report demonstrates wide regional variation in the percentage of patients enrolled in "hospice" during the last three days of an individual's life. The researchers conclude: "Referrals to hospice care that are done too late ... adversely affect the quality of care, the reported experiences of patients and families, and their satisfaction with the health care system."
On the other hand, the report cites "clinical evidence" that shows that "feeding tube placement" in patients with advanced dementia "does not prolong life or improve outcomes, and in fact leads to further complications and adverse effects such as the increased use of restraints." Nonetheless, the report shows that in some regions of the country, 12% to 14% of patients with dementia may be on feeding tubes, pointing to locations such as southern California, Lake Charles, Louisiana, and Dearborn, Michigan.
For the full report, see the Dartmouth Atlas project report, "Our Patients, Ourselves: Health Care for an Aging Population."
Further, for an region-specific analysis of the report findings, see iNewsource's "Care for San Diego's Dying Patients Needs to Improve, Study Finds."
Tuesday, February 16, 2016
Many of you recognize the name Diane Rehm, from NPR, where she has had her show, The Diane Rehm Show, for many years. "Retiring" at the end of 2016 doesn't mean she will be out of the public eye, according to a recent article in the Washington Post. Diane Rehm’s next act: Using her famed voice to fight for the good death is a profile of Mrs. Rehm that also summarizes her writings. Her 2014 memoir relates how her husband ended his life on his own by refusing food and fluids, since physician-aided dying is not legal in their state.
Mrs. Rehm is quoted "[I]t’s time for me to retire, especially on the issue of right-to-die, to be able to speak out and to speak freely....” In addition to supporting the right to die, she plans to champion research on Alzheimer's and Parkinson's.
February 16, 2016 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Retirement | Permalink | Comments (0)
Friday, February 5, 2016
My friend and mentor Jeffrey Marshall, a/k/a ElderLawGuy on Twitter, once again uses practical experiences to illustrate how "planning in advance" for the possibility of emergencies makes sense, particularly as our loved ones age. He tracks the aftermath of an always dreaded "fall," an event in the life of an older person that too often can precipitate a downward spiral in the absence of a holistic care plan plan:
[M]y wife and I were thousands of miles away. How could we get her the immediate help that she needed?
Fortunately, the help was available. My wife and I had previously hired a professional care manager, Bonnie, in the town where gramma lives. As soon as we got the call from the emergency room we contacted Bonnie and filled her in. She swung into action at once. She visited gramma and evaluated her condition. She implemented a system of caregivers to stay with gramma. She set up a Monday morning appointment with gramma’s physician, attended it with her, and reported back to the family.
Bonnie served as the family’s eyes and ears and local expert and was able to ensure that gramma got the care and support she needed when she needed it.
For more details, read Jeff's blog post, "Caring for Mom when you are far away." I know that in my own family, who also lives far apart, over the course of my regular visits home I probably visited 10 different care providers with my mother or sister. This was during the year before we actually made the decision for my father. I kept saying "we can make these decisions without an emergency." It became my mantra. Not every emergency needs to be an emergency....
Thursday, January 28, 2016
Here are two recent appellate cases that offer views on issues of "accountability" by surrogate-decision makers.
In the case of In re Guardianship of Mueller (Nebraska Court of Appeals, December 8, 2015), an issue was whether the 94-year-old matriarch of the family, who "suffered from moderate to severe Alzheimer's disease and dementia and resided in a skilled nursing facility," needed a "guardian." On the one hand, her widowed daughter-in-law held "powers of attorney" for both health care and asset management, and, as a "minority shareholder" and resident at Mue-Cow Farms, she argued she was capable of making all necessary decisions for her mother-in-law. She took the position that appointment of another family member as a guardian was unnecessary and further, that allowing that person to sell Mue-Cow Farms would fail to preserve her mother-in-law's estate plan in which she had expressly devised the farm property, after her death, to the daughter-in-law.
The court, however, credited the testimony of a guardian-ad-litem (GAL), who expressed concern over the history of finances during the time that the daughter-in-law and the mother-in-law lived together on the farm, and further, expressing concerns over the daughter-in-law's plans to return her mother-in-law to the farm, even after a fall that had caused a broken hip and inability to climb stairs. Ultimately, the Court of Appeals affirmed the lower court's appointment of the biological daughter as the guardian and conservator, with full powers, as better able to serve the best interest of their elder.
Despite rejection of the POA as evidence of the mother's preference for a guardian, the court concluded that it was "error for the county court to authorize [the daughter/guardian] to sell the Mue-Cow property.... There was ample property in [the mother's] estate that could have been sold to adequately fund [her] care for a number of years without invading specifically devised property."
In an Indiana Court of Appeals case decided January 12, 2016, the issue was whether one son had standing to request and receive an accounting by his brother, who, as agent under a POA, was handling his mother's finances under a Power of Attorney. In 2012, Indiana had broadened the statutory authority for those who could request such an accounting, but the lower court had denied application of that accounting to POAs created prior to the effective date of the statute. The appellate court reversed:
The 2012 amendment did confer a substantive right to the children of a principal, the right to request and receive an accounting from the attorney in fact. Such right does apply prospectively in that the child of a principal only has the statutory right to request an accounting on or after July 1, 2012, but not prior to that date. The effective date of the powers of attorney are not relevant to who may make a request and receive an accounting, as only the class of persons who may request and receive an accounting, and therefore have a right to an accounting, has changed as a result of the statutory amendments to Indiana Code section 30-5-6-4. Therefore, that is the right that is subject to prospective application, not the date the powers of attorney were created
These cases demonstrate that courts have key roles in mandating accountability for surrogate decision-makers, whether under guardianships or powers of attorney.
January 28, 2016 in Advance Directives/End-of-Life, Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Property Management, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Tuesday, January 26, 2016
Mother Jones, in the January/February 2016 issue, ran a story, My Right to Die: Assisted Suicide, My Family, and Me by Kevin Drum. This story starts with a personalized account of an individual who was terminally ill but didn't have the option of physician-aided dying. The story provides an in-depth look at the laws of physician-aided dying and the arguments, both for and against. The article then becomes even more personal when the author reveals his diagnosis of cancer for which there is no cure. He reviews his options for the future and remarks that the California law on physician-aided dying now provides an option he didn't have until the law was signed.
The author speculates: is "assisted suicide is the next big civil rights battle? The fact that four states have approved assisted suicide in just the past seven years suggests momentum may finally be reaching critical mass. What's more, if Gallup's polling is to be believed, the word "suicide" has finally lost its shock value. Still, legislation continues to fail more often than it passes, even in blue states like Massachusetts and Connecticut. Right now, it's just too early to tell." The article can serve as a good foundation for a classroom discussion.
Monday, January 25, 2016
I think I might like winter better, if it always happened "conveniently" and with plenty of notice, as did Saturday's snow in Pennsylvania. For once, I was prepared to be at home, with a stack of good reading materials for catching up when the joys of house-cleaning and snow shoveling faded.
I am intrigued by the Fall 2015 issue of the NAELA Journal that focuses on how advances in genetic testing and medicine may be reflected in the roles of lawyers who specialize in elder and special needs counseling. A leading article in the issue introduces the three primary uses of modern genetic testing -- for diagnosis of disease, for determination of carrier status, and for predictive testing -- while reminding us there are limits to each function. In looking at age-related issues, the authors note:
Genetic testing is beginning to reveal information regarding susceptibilities to the diseases associated with old age: Alzheimer’s disease, Parkinson’s disease, diabetes, and cancer. Genetic test results showing a higher risk of such diseases can result in a cascade of consequences. Francis Collins, mentioned at the beginning of this article, responded to his test results thoughtfully by making lifestyle changes to reduce the probability that the increased genetic risk would be expressed in actual disease. It is important to note that, for some conditions, lifestyle factors’ influence on disease risk is understood; however, for many of the conditions that affect seniors, this influence is not yet known.
Other reactions to a high-risk test result may be more aggressive than diet and exercise changes. A well-publicized example is Angelina Jolie’s bilateral mastectomy. She was cancer-free but learned that she carries a BRCA1 mutation, which increases her lifetime risk for breast and ovarian cancer. She chose to undergo prophylactic mastectomy to reduce her breast cancer risk, whereas other women choose to increase breast cancer surveillance, such as undergoing more mammograms and breast MRIs. Both options are available to women who carry a BRCA1/2 mutation.
Will those found to be at elevated risk for more complex conditions such as Alzheimer’s disease or Parkinson’s disease make premature life choices, such as early retirement or marriage, based on perceived risk? Earlier in this article it is explained that an individual’s genotype rarely determines his or her medical destiny. For example, many people with a higher genetic risk for Alzheimer’s disease will not actually develop it, while many with no apparent higher genetic risk will. Is the risk that members of the general public will misunderstand and overreact to the results of a genetic test sufficient reason to prevent them from obtaining the information gleaned from such a test? Should we be ensuring that those undergoing genetic testing are aware of its benefits and limitations through individualized genetic counseling? This, of course, presents its own challenges of access and availability.
In reading this, it seems likely that lawyers may encounter complicated issues of confidentiality, especially when counseling "partnered" clients, while also increasing the significance of long-range financial planning and assets management.
For more, read Genetic Testing and Counseling Primer for Elder Law and Special Needs Planning Attorneys, by CELA Gregory Wilcox and Rachel Koff, Licensed Certified Genetic Counselor.
January 25, 2016 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Estates and Trusts, Ethical Issues, Retirement, Science | Permalink | Comments (0)
Wednesday, January 20, 2016
The January 19, 2016 issue of the Journal of the American Medical Association (JAMA) is a theme issue on Death, Dying and End of Life. There are 15 articles and opinion pieces on a range of topics, including several on physician-aided dying, as well as an audio of the editors' summary. Check it out!
Wednesday, January 13, 2016
My Blogging colleague Becky Morgan suggested that our faculty readers share hot topics or videos they are using in Elder Law courses. Along that line, I'm using an excerpt from a Dateline NBC program (archived in part by NBC, although special arrangements appear to be required for copies) from several years ago, that provides a dramatic introduction to a number of age-related legal issues.
The program tells the story of Dr. Gerald Klooster and his family. In 1995, friends of the family became concerned when they learned that Dr. Klooster, once a practicing obstetrician in California who was forced to retire early from his practice as the result of a diagnosis of Alzheimer's, had an appointment with his wife to meet with Dr. Kevorkian, of "assisted suicide" fame. One son, also a physician, became so concerned that he made the decision to whisk away his father to the son's own state of Michigan, for safeguarding. That triggered a two-state custody battle, initially resulting in inconsistent court rulings. Eventually, however, Dr. Klooster was returned to California where he resumed living with his wife, Ruth, and regularly saw his other children and grandchildren. The NBC program shows Gerald swimming and interacting with his family members.
One night, however, emergency personnel were summoned to the Klooster home, when it was learned that Gerald had ingested as many as 60 sleeping pills and alcohol in the middle of the night. Ruth is the one who called the emergency personnel, but then also reportedly directed them not to provide certain life-saving treatments. She was relying on her husband's pre-dementia living will.
Gerald Klooster did survive, and the NBC program provides fascinating interviews with family members, and shows the couple sitting hand-in-hand. Did he knowingly attempt to take his own life? Did he do so because he was a physician and, as his wife put it, "didn't want to live the disease through?" Or did Alzheimer's prevent him from having the capacity to make any such decision? The saga was also detailed in a New York Times article, linked here.
Lots of food for discussion with this story. It introduces the limitations of advance directives or living wills; it encourages discussion about Alzheimer's as a "real" phenomenon; it provides a stage for discussing powers of attorney, guardianships and family caregiver roles, just to name a few topics still "hot" today. Plus, it offers historical perspective on recent changes in laws, including uniform laws on jurisdiction for protective proceedings for adults, and assisted-suicide laws, including the California law that became effective on January 1 of this year.
The Klooster Saga lasts several years beyond the NBC Dateline story itself, as Dr. Klooster did live with his wife in California for additional years, before spending his last 18 months in a nursing center. According to this San Francisco news report, he passed away at the age of 72 of natural causes, but, sadly, the break in the relationship between his physician-son and the rest of the family had not healed.
January 13, 2016 in Advance Directives/End-of-Life, Cognitive Impairment, Crimes, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, State Cases | Permalink | Comments (0)
Tuesday, January 5, 2016
Over the holidays in December, I spent time with family in a hospital, responding to an emergency health situation. One of the staff told me it is "always" busier at the holidays, and she attributed this to family members gathering together and "realizing" that a loved one's health was declining. However, there may be more to it than that. Former New York Administrative Law Judge Karen Miller shared a very interesting Wall Street Journal article reporting on the trends in deaths at the holidays. While some of the information is, perhaps, expected, as you think about stress and weather contributing to health risks, the spike in deaths in early 2015 was unusual, when "nearly a third more senior citizens died than normal in the first two weeks of the new year." For more data, read "Why Death Doesn't Take a Holiday This Time of Year."
Thankfully, in our family we weren't dealing with a death! Thanks for sharing this article, Karen.
Monday, January 4, 2016
In a recent Associated Press article, Jimmy Carter Shows 90+ Age Not a Barrier to Major Surgery, the writers cite several examples of successful surgeries or advanced treatments for the most senior of senior citizens.
Irwin Weiner felt so good after heart surgery a few weeks before turning 90 that he stopped for a pastrami sandwich on the way home from the hospital. Dorothy Lipkin danced after getting a new hip at age 91. And at 94, William Gandin drives himself to the hospital for cancer treatments.
Jimmy Carter isn't the only nonagenarian to withstand rigorous medical treatment. Very old age is no longer an automatic barrier for aggressive therapies, from cancer care like the former president has received, to major heart procedures, joint replacements and even some organ transplants.
In many cases, the most senior citizens are getting the same treatments given to people their grandchildren's age — but with different goals.
"Many elderly patients don't necessarily want a lot of years, what they want is quality of life," said Dr. Clifford Kavinsky, a heart specialist at Rush University Medical Center in Chicago. "They want whatever time is left for them to be high quality. They don't want to be dependent on their family. They don't want to end up in a nursing home."
The article makes the point that "some 90-year-olds" are fitter than some 60-year-olds" and that age alone should not be the deciding factor. Indeed, in my own family we have faced major surgery questions with both my father and, more recently, my mother, and the result was a "different" decision in each instance, based on a whole host of factors. These can be tough calls.
Thursday, December 31, 2015
An article in the most recent issue of the ABA Commission on Law & Aging, BIFOCAL focuses on instructional directives. In light of CMS reimbursing doctors for end of life discussions with patients, author Susan P. Shapiro, in The Living Will as Improvisation, suggests "it is appropriate to reflect on the legacy of advance directives and ask how physicians might best serve their patients as they anticipate life’s end."
The author notes that
Although the value of proxy directives, which designate a medical decision maker in the event that a person loses capacity in the future, has been repeatedly demonstrated, that of instructional directives or so-called living wills, which state treatment preferences, has not. A new report by the Institute of Medicine concludes that legal approaches embodied in living wills have “been disappointingly ineffective in improving the care people nearing the end of life receive and in ensuring that this care accords with their informed preferences .... (citations omitted).
However, the author discusses the lack of hard data makes it difficult to determine whether living wills have little usefulness these days. The author turns to her own research, explaining that for 3 years she and hospital social worker
observed medical decision making on behalf of patients without decision-making capacity, day after day, from admission to discharge. Daily observations over the course of each patient’s ICU stay tracked when anyone asked about or referred to an advance directive, how the directive was used, and the correspondence between the patient’s treatment preferences articulated in the directive and the host of decisions made on their behalf....
The article discusses her findings regarding the role of advance directives in these cases . It's quite illuminating, especially the discussion about the correlation (or lack thereof) between the directive's existence and how decisions are made. The author suggests there are significant differences between making the directive when all is well and using the directive when all is not. The author concludes the article with this thought: "[a] truly directive living will is not a script, but rather an evolving, ongoing dialogue throughout the life course with those who may someday be called to improvise on our behalf. Let’s hope that Medicare dollars are used to help enrich the conversation."