Tuesday, November 24, 2015
We have all heard stories of an elder making the family promise to never admit the elder into a nursing home. Sometimes, however, people need that level of care, and well-meaning family members are not always able to provide the needed care. That is part of the story of When to Ignore a Promise to ‘Never Put Me in a Home’ which ran in the New York Times on November 9, 2015. The article features an unidentified patient with a huge bedsore, who had extracted such a promise from her family. Following that promise to the letter, the family members did their best to care for her, but despite their best efforts, complications occurred. The doctor authoring the story explained some background
Our patient came from a poor immigrant household without much community support. For years, as she felt herself slipping, she had emphasized over and over again that she never wanted to go into a “home” or be tended by strangers. She wanted to stay at home with her children. Nothing unusual there.
What was unusual was the precision with which her children followed her wishes. As their mother became really confused, then silent, then bedbound, they continued to care for her themselves in the back bedroom.
Turning the focus of the article onto advance directives, and the pros and cons of directives, the doctor writes
[Advance directives] are supposed to give people some control over the future. More often than not, perhaps, the future refuses to be controlled.
Directives may not be detailed enough to help organize a patient’s care. They may be so detailed that doctors and relatives cannot agree on how to interpret the minutiae. Directives may be overlooked in the heat of emergency, ignored out of pure lassitude, or lost somewhere in the closet.
Or, as in our patient’s case, they may be clear and simple, and followed to the letter. And look what happened to her.
The doctor considers health care agents as a better choice, but notes the questions agents must ask principals but frequently don't: "'Do you really want me to do exactly what you are telling me to do? How much wiggle room do I get?'" This is important for many reasons, not the least of which is what you believe and prefer when you sign your directive may not be the same when it is time to use the directive (what the author refers to as the past you and present you).
Our own patient and her family got all bolluxed up in obligations to their past selves. The bottom line was clear — the patient never would have wanted what she got. But even given that, we wondered, when should her children have changed course?
We had no good answers. Our patient spent a few days in the hospital and then went straight to a nursing home to finish a long course of antibiotics and, presumably, to live there for the duration.
Monday, November 9, 2015
Professor Janet Dolgin from Hofstra University has a very good article in the October 2015 issue of ABA's The Health Lawyer on "Reimbursing Clinicians for Advance-Care Planning Consultations: The Saga of a Healthcare Reform Provision." The article offers facts, analysis, historical perspective and opinion about the need to approve payment to health care providers in order for them to be able to engage fully with clients and their families in careful conversations about advance care planning, including end-of-life decisions. The article is concise, but the downside for interested readers is the digital version of the article is currently behind a pay-wall for ABA Health Care Section members only.
To stimulate your interest in tracking down a hard copy, perhaps through your law colleagues or local law libraries, here are a few highlights. Professor Dolgin writes:
Advance care planning is part of good healthcare. Thus, paying clinicians to talk with patients about advance care planning makes sense: it enhances advance care planning and thereby serves to effect good healthcare. "If end-of-life discussions were an experimental drug," writes Atul Gawande in his recent book, Being Mortal, "the FDA would approve it." Yet efforts to provide for reimbursement to clinicians for time and attention given to advance-care-planning conversations with Medicare patients have been stymied since 2009 (at least until quite recently) by the politics of healthcare reform....
Published, peer-reviewed research shows that ACP [Advance Care Planning] leads to better care, higher patient and family satisfaction, fewer unwanted hospitalizations, and lower rates of caregiver distress, depression and lost productivity....
In July 2015 CMS accepted the recommendation [supported by AARP, the AMA and others identified in the article] and opened the proposal to [pay health care clinicians for such consultations] to a two month-comment period in its proposed physician payment schedule for 2016.... If the proposed rule is accepted by CMS, payments for advance-care planning consultations are slated to begin in early January 2016.
The article demonstrates well the tension between the use of administrative law options to achieve what Congress finds unable or unwilling to address as a matter of Congressional laws. Of course, administrative processes can gore the ox of either side on a politically-charged debate.
Perhaps I am alone in being sad that it takes billing codes approved by insurance providers and CMS to achieve appropriate consultation between health care staff and families about advance decision-making. But Professor Dolgin's article is a realistic explanation for exactly why that "is" necessary.
November 9, 2015 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, State Statutes/Regulations | Permalink
Sunday, November 1, 2015
My friend Jim Pietsch at the U. of Hawaii elder law program offers this clever annual event for elder individuals to encourage the completion of advance directives. The University of Hawai'i Elder Law Program (UHELP) at the William S. Richardson School of Law held its annual "NITE" OF THE "LIVING WILL" on October 29, 2015. Here is the description of the program from their website.
During this daylight presentation of our annual Halloween event, the University of Hawai`i Elder Law Program will present a talk about medical treatment decision-making and advance care planning to include informed consent/informed refusal, individual instructions for health care, durable powers of attorney for health care, comfort care only-DNR bracelets/necklaces and Provider Orders for Life-Sustaining Treatment (POLST).
You will have the opportunity to Decide What If? you are unable to communicate your wishes for end of life care. If you still have an old “Living Will” or if you are unsure of how end-of-life decisions will be made for you, come and find out how to make an advance directive or other documents that will help make sure your wishes regarding health care decisions are honored.
The public, especially kupuna, family caregivers, service providers, students and faculty are invited. Tea and little treats will be served. Donations to cover the cost of this hydration and nutrition accepted.
This is such a creative program and kudos to Jim for all of his work!
Thursday, October 29, 2015
Friends are an integral part of the fabric of our lives. Perhaps the most important time in one's life to have friends is at the end of life, according to an article in the New York Times. The article, Near the End, It's Best to be "Friended" focuses on what has become known as the "unbefriended" elders. When we think "unbefriended", we think of someone without friends or relatives. Maybe the person has outlived everyone. But the article offers that "unbefriended" has a much broader meaning: "you can also be unbefriended, even if you do have friends and family, if you are incapacitated and haven’t appointed someone you trust as a health care proxy." The article cites a study that shows an increase in the number of unbefriended elders and notes the likelihood of a continued increase since the chance of dementia increases with age.
More and more patients who lacked decision-making capacity, had no available surrogates and had not completed an advance directive,” said Martin Smith, director of clinical ethics at the Cleveland Clinic.
The kinds of unrepresented elders might change, too. In the past, many were marginalized — homeless, addicted, mentally ill, estranged. Baby boomers, with higher rates of childlessness and divorce, have smaller and more mobile families, and longer life spans. “They could live a largely mainstream life, but outlive everyone around them..."
The article notes that some states have statutes giving priority order to relatives and, in some instances, others to make health care decisions for those who haven't made a directive.
Twenty-four states and the District of Columbia have added “close friend” to that list, according to the American Bar Association Commission on Law and Aging; some states also include aunts and uncles, nieces and nephews, and adult grandchildren. A member of the clergy can serve in that role in Texas. The wider the net, the reasoning goes, the greater the likelihood of finding someone authorized to make decisions. Legalized same-sex marriages also mean fewer unrepresented gay and lesbian older adults.
This is an interesting article that provides good content for discussion with students about the importance of advance directives, and the potential for problems without them.
Wednesday, October 28, 2015
As the Centers for Medicare & Medicaid Services prepares to finalize a plan to pay physicians for discussing end-of-life treatment options with Medicare patients, this month’s Kaiser Health Tracking Poll finds that about 8 in 10 of the public favors Medicare and private insurance covering such discussions and about 9 in 10 say doctors should have these discussions with their patients. However, relatively few (17 percent) say they’ve had such discussions with a doctor or other health care provider, including 27 percent of people age 65 or older, while half of the public says they would want to have such a discussion. Over 8 in 10 say they would feel very comfortable talking about their end-of-life medical wishes with their spouse or partner and closer to half say they would be very comfortable talking with a doctor, their children, their close friends or their parents....
The detailed discussion of the poll results provides interesting statistics. Consider the following:
About 9 in 10 (89 percent) say doctors should discuss end-of-life care issues with their patients. But, relatively few (17 percent) say they’ve had such discussions with a doctor or other health care provider, including 34 percent of people age 75 or more, 23 percent of people age 65-74, 19 percent of those age 50-64 and 12 percent of those age 18-49. In addition, those who report having a debilitating disability or chronic condition are more likely to say they have discussed their end-of-life care wishes with a health care provider than those without a disability (31 percent vs. 13 percent). A third of the public says they have participated in a discussion with a doctor about another family member’s wishes about their care at the end of life, including 46 percent of those ages 50-64. Across age groups, many say they would want to have such a discussion about their own end-of-life care (50 percent overall).
The full poll results are available here.
Wednesday, October 21, 2015
USA Today ran an article on October 15, 2015 about the cost of long term care for individuals with dementia, especially those with Alzheimer's. The estimated price tag? Almost three quarters of a million dollars! Got $730K saved for nursing care? Dementia could cost that much notes that a person with dementia needing long term care could live for several years, needing round the clock care,the cost of that care mounts up and "leav[es] families in an emotional, financial and logistical quagmire."
This is a growing issue and one that will affect many. "Boomers are increasingly faced with supporting both their children and their parents, or at least helping to figure out how their parents can best help themselves. Senior citizens with heart disease and cancers that were once a death sentence are now living far longer."
The article discusses Medicare and Medicaid as far as coverage for long term care and the differences in Medicaid programs amongst states.
Tuesday, October 20, 2015
ABA's Bifocal, an electronic journal from the ABA Commission on Law and Aging has released one of its October issue articles. Written by Charlie Sabatino in his usual bold style, we confront ten "Myths and Facts About Health Care Advance Directives," sometimes better (if confusingly) known as "living wills." To tease the article, Myth #3 is "Advance Directives are legally binding, so doctors have to follow them." You will want to read the rest of the story....
Tuesday, October 6, 2015
California Governor Jerry Brown signed the California legislature's "right to die" act on Monday, October 5. From coverage in the San Diego Union-Tribune:
Gov. Jerry Brown, a lifelong Catholic and former Jesuit seminarian, said he consulted a Catholic bishop, two of his own doctors and friends "who take varied, contradictory and nuanced positions."
"In the end, I was left to reflect on what I would want in the face of my own death," wrote the Democratic governor, who has been treated for prostate cancer and melanoma. "I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill."
Brown's signature on the right-to-die legislation Monday capped an intensely personal debate that dominated much of this year's legislative session and divided lawmakers. Many lawmakers also drew on personal experience to explain their decisions to support or reject legislation making California the fifth state to allow terminally ill patients to use doctor-prescribed drugs to end their lives.
California joins Oregon, Washington, Vermont and Montana in permitting certain assistance in decisions to end one's life.
Thursday, October 1, 2015
The Michigan Supreme Court recently invited amicus briefing by Elder Law attorneys and Disability Rights attorneys, in advance of oral argument in an interesting case involving a nursing home resident's claims of false imprisonment by the facility. The legal question of what is sometimes referred to as an "involuntary" admission for care initiated by family members or concerned others acting as "agents" for an unhappy or uncooperative principal, is important and challenging, especially if accompanied by conflicting assessments of mental capacity.
Following the Michigan Court of Appeals' 2014 ruling in Estate of Roush v. Laurels of Carson City LLC, in September 2015 the Michigan Supreme Court agreed to hear arguments on whether there are genuine issues of material fact on the resident's claim of falsely imprisonment for a period of approximately two weeks. Ms. Roush alleges the nursing home acted improperly in reliance on her "patient advocate," claiming that she was fully able to make health care decisions for herself, and therefore there were no legally valid grounds for her advocate to trump her wishes. Alternatively, Ms. Roush argued she validly terminated the patient advocate's authority.
In Michigan, individuals may appoint a statutorily-designated "patient advocate," with limited authority as an agent for certain health care decisions. Michigan law provides at M.C.L.A. Section 700.5506 that: "The [written] patient advocate designation must include a statement that the authority conferred under this section is exercisable only when the patient is unable to participate in medical or mental health treatment decisions...."
The Supreme Court's order identified specific issues for additional briefing by the parties. Further, the court expressly invited the "Elder Law and Disability Rights Section of the State Bar of Michigan. . . to file a brief amicus curiae. Other persons or groups interested in determination of the issues presented in this case may move the Court for permission to file briefs amicus curiae."
October 1, 2015 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Housing, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Tuesday, September 29, 2015
Over the weekend I caught an interview with Brian Liu, co-founder of LegalZoom, broadcast on From Scratch, a radio show about "entrepreneurial life." The host, Jessica Harris, who has an interesting business background of her own, is a very good interviewer, encouraging guests to explore strengths and weaknesses of their ideas, moving from first inspiration to current goals. She also asks "work/life balance" questions, often getting candid admissions of the private struggles some have to achieve balance.
I was intrigued with Liu's central premise, that his company does not compete, at least not directly, with law firms for business. Rather, he believes that the vast majority of clients are drawn to his company precisely because they would never go to a lawyer, whether because of cost, unease about attorneys, or perceptions about value.
It was also interesting to hear that Legal Zoom's first ten clients, accessing the company's on-line document portal on a Friday night, were seeking "living wills." That fact tells us a lot about underserved legal and health care needs, doesn't it.
September 29, 2015 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, Legal Practice/Practice Management, Web/Tech | Permalink | Comments (0)
Tuesday, September 15, 2015
The New Mexico Court of Appeals issued its opinion in August in the case of Morris, et al v.Brandenburg. The trial court had previously ruled that the statute in question, N.M. § 30-2-4 was unconstitutional. The appellate court determined that "[t]he question presented is whether this statute may constitutionally be applied to criminalize a willing physician's act of providing a lethal dose of a prescribed medication at the request of a mentally competent, terminally ill patient who wishes a peaceful end of life (aid in dying) as an alternative to one potentially marked by suffering, pain, and/or the loss of autonomy and dignity." id. at ¶ (1). The trial court had found a fundamental liberty interest to have physician aid-in-dying under the state constitution, but the appellate court disagreed. id.
Aid in dying, the medical concept of dying with autonomy and dignity, is a relatively recent human phenomena and deserves appropriate public evaluation and consideration. However, as a new legal consideration, it must also be carefully weighed against longstanding societal principles such as preventing a person from taking the life of another; preventing suicide; preventing assisted suicide; promoting the integrity, healing, and life preserving principles of the medical profession; protecting vulnerable groups from unwanted pressure to considering aid in dying as the best alternative to other medical options; and promoting human life where aid in dying is not the appropriate medical option despite a patient's request for its use... The recent advances in life-prolonging medical care and the public acceptance of aid in dying in some states has not diminished the other longstanding societal principles and concerns regarding intentional killing, the dying process, the preservation of life, and the basic life saving principles embedded in the medical profession.
Id. at ¶ 37 (citations omitted). The appellate court goes on to note that the dying process itself and the resulting death are not included in the state's constitutional enumerated rights and " can only qualify as inferences that might exist within the categories of liberty or happiness." id. at ¶ 41. The court also had concerns regarding the narrow application of the right as it would only apply to certain citizens who are terminally ill, death within a certain time, etc. id. at ¶¶ 45-47 After reviewing the remaining arguments of the plaintiffs, the majority ruled.
We reverse the district court's ruling that aid in dying is a fundamental liberty interest under the New Mexico Constitution. Accordingly, we reverse the district court's order permanently enjoining the State from enforcing Section 30-2-4. We affirm the district court's determination that, for statutory construction purposes, Section 30-2-4 prohibits aid in dying. Separate from the Concurring Opinion, I would also remand this case to the district court to make any further findings it deems necessary, to conduct both an intermediate scrutiny and rational basis review of Section 30-2-4, as well as dispose of Plaintiffs' remaining claims.
Id. at ¶ 54. The opinion includes concurring and dissenting opinions.
Sunday, September 13, 2015
The NY Times ran a story that on September 11, 2015, the California legislature passed a bill that provides for physician-aided dying for folks with terminal illnesses. California Legislature Approves Assisted Suicide notes that if Governor Brown signs the bill, California will become the 4th state with a statute allowing PAD (physician-aided dying). The other three are Washington, Oregon, and Vermont. (It is allowed in Montana pursuant to a state supreme court decision. A New Mexico appellate court recently overturned a trial court opinion that allowed it).
The story notes that the California legislation is based on Oregon's, but with some clear differences:
The California law would expire after 10 years and have to be reapproved, and doctors would have to consult in private with the patient desiring to die, as part of an effort to ensure that no one would be coerced to end his or her life — a primary concern for opponents of the law.
You may recall that this is not the first attempt to approve PAD in California. "Previous bills to legalize assisted suicide have failed in California, including one this year, when pressure from the Roman Catholic Church helped stall a similar measure in the Assembly. (The bill was resurrected for a special session, where it could bypass Assembly committees.)"
Sunday, August 16, 2015
The National Aging & Law Conference is scheduled for October 29-30, 2015 at the Hilton Arlington, Arlington, VA. A number of ABA commissions and divisions are sponsors of this conference including the Commission on Legal Problems of the Elderly, the Coordinating Committee on Veterans Benefits & Services, the Senior Lawyers Division and the Real Property, Trust & Estate Law Section. The website describes the conference
The 2015 National Aging and Law Conference (NALC) will bring together substantive law, policy, and legal service development and delivery practitioners from across the country. The program will include sessions on Medicare, Medicaid, guardianship, elder abuse, legal ethics, legal service program development and delivery, consumer law, income security, and other issues.
The 2015 National Aging and Law Conference marks the second year that this conference has been hosted by the American Bar Association. This year’s agenda will include 24 workshops and 4 plenary sessions on key topics in health care, income security, elder abuse, alternatives to guardianship, consumer law, and legal service development and delivery. The focus of the agenda is on issues impacting law to moderate income Americans age 60 and over and the front line advocates that serve them.
August 16, 2015 in Advance Directives/End-of-Life, Cognitive Impairment, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, Medicaid, Medicare, Programs/CLEs, Social Security, Veterans | Permalink | Comments (0)
Friday, August 14, 2015
In a recent article for the University of Baltimore Law Review, John C. Craft, a clinical professor at Faulkner University Law, draws upon the history of legislation governing powers of attorney to advocate a return to effectiveness of the POA being conditioned by an event, such as proof of incapacity. Professor Craft, who is the director of his law school's Elder Law Clinic, writes:
Section 109 in the Uniform Power of Attorney Act should be revised making springing effectiveness of an agent's powers the default rule. Springing powers of attorney provide a type of protection that may actually prevent power of attorney abuse. The current protective provisions in the UPOAA focus in large part on the types of abuse that occur after an agent has begun acting for the principal. As opposed to arguably ineffective “harm rules” intended to punish an unscrupulous agent, springing powers of attorney are a type of “power rule” intended to limit an agent's “ability to accumulate power . . . in the first place.” The event triggering an agent's accumulation of power -- the principal's incapacity -- may never occur. A financial institution may prevent an unscrupulous agent from activating his or her power and conducting an abusive transaction simply by asking for proof that the principal is incapacitated. In addition, making springing effectiveness the standard serves the goal of enhancing a principal's autonomy.
For his complete analysis, read Preventing Exploitation and Preserving Autonomy: Making Springing Powers of Attorney the Standard.
August 14, 2015 in Advance Directives/End-of-Life, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Legal Practice/Practice Management, Property Management, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Thursday, August 6, 2015
From a recent NPR piece on Knowing How Doctors Die Can Change End-of-Life Discussions:
Dr. Kendra Fleagle Gorlitsky recalls the anguish she felt performing CPR on elderly, terminally ill patients. It looks nothing like what we see on TV. In real life, ribs often break and few survive the ordeal.
"I felt like I was beating up people at the end of their life," she says. "I would be doing the CPR with tears coming down sometimes, and saying, 'I'm sorry, I'm sorry, goodbye.' Because I knew that it very likely not going to be successful. It just seemed a terrible way to end someone's life."
Gorlitsky now teaches medicine at the University of Southern California and says these early clinical experiences have stayed with her. Gorlitsky wants something different for herself and for her loved ones. And most other doctors do too: A Stanford University study shows almost 90 percent of doctors would forgo resuscitation and aggressive treatment if facing a terminal illness.
This selection also reminded me about an important essay from a few years ago, How Doctors Die, by Dr. Ken Murray. Hat tip to my Dickinson Law colleague Professor Laurel Terry for sending me this NPR piece.
Friday, July 31, 2015
Which is More Terrifying? "Dying Early" or "Living Long" (and Doing Financial Planning Necessary for the Latter)?
The New York Times recently carried a column that probably hit home with many -- if, that is, one could bring oneself to read it. While some people keep postponing "the conversation" discussion about how they want to die, there is plenty of evidence many people are also avoidant of conversations about financial planning for a long life.
Educating consumers to be better purchasers seems a sensible idea, but an example from recent history illustrates the problem with that. For a long time, the simple investment advice given to consumers has been “buy an index fund.” Index funds are such standardized products — mirroring the Standard & Poor’s 500-stock index does not require much management — that just about all of them were initially low cost while offering wonderful diversification.
Consumers have been buying index funds, and the market has responded by providing hundreds of them. Nearly all E.T.F.s are index funds.
But the market has also responded by charging high fees for this standardized product. In 2004, Ali Hortacsu and Chad Syverson, economists at the University of Chicago, found that index funds had as much variability in fees as their more labor-intensive actively managed counterparts. And these fees are nothing to be scoffed at — paying 1 percent more every single year in fees can compound over a lifetime to noticeably lower returns.
For more on the problem with financial advice -- with encouragement to "face up to something [you too] may have been dreading," read Why Investing Is So Complicated, and How to Make it Simpler, by Sendhil Mullainathan.
My thanks to Prof. Laurel Terry and Jack Bennett, Esq. for sharing this column.
Thursday, July 16, 2015
Probably the best bang for your CLE buck in Pennsylvania comes from the two-day Elder Law Institute hosted each summer by the Pennsylvania Bar Institute. This year the 18th annual event is on July 23 & 24 in Harrisburg.
- "The Year in Review" with attorneys Marielle Hazen and Robert Clofine sharing duties to report on key legislative, regulatory and judicial developments from the last 12 months;
- How to "maximize" eligibility for home and community based services (Steve Feldman and Pam Walz);
- Cross disciplinary discussions of end-of-life care with medical professionals and hospice providers;
- LTC "provider" perspectives (Kimber Latsha and Jacqueline Shafer);
- Latest on proposals to change Veterans' Pension Benefits (Dennis Pappas);
- Implementation of the Pa Supreme Court's Elder Law Task Force Recommendations (Judges Lois Murphy, Paula Ott, Sheila Woods-Skipper & Christin Hamel);
- A closing session opportunity, "Let's Ask the Department of Human Services Counsel" (with Addie Abelson, Mike Newell & Lesley Oakes)
There is still time to registration (you can attend one or both days; lunches are included and there is a reception the first evening).
I think this is the first year I have missed this key opportunity for networking and updates; but I'm sending my research assistant!
July 16, 2015 in Advance Directives/End-of-Life, Cognitive Impairment, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Cases, Health Care/Long Term Care, Legal Practice/Practice Management, Medicaid, Medicare, Programs/CLEs, Property Management, Social Security, State Cases, State Statutes/Regulations, Veterans | Permalink | Comments (0)
Friday, July 10, 2015
On July 8, 2015, the Centers for Medicare and Medicaid Services (CMS) announced the proposed 2016 Physician Fee Schedule that includes a provision for paying doctors to talk to patients about end of life care. Referenced in the proposed rule as advance care planning, comments are due by 5 p.m. on September 8, 2015. The proposed rule will appear in the Federal Register on July 15, 2015. For more information see Kaiser Health News (KHN) Medicare Proposes Paying Doctors For End-Of-Life Discussions.
Tuesday, July 7, 2015
Many have written with great sensitivity and candor about attending the death of a loved one, including a parent. Ellen Goodman had a lovely op-ed recently, How to Talk About Dying, in the New York Times. But more important even than her personal journey with her own parents, was how she and others have used their mutual experiences and concerns to start The Conversation Project.
As background, Ms. Goodman writes:
When my mother died from heart failure and dementia, I began to talk with others. It was extraordinary. Everyone seemed to have a piercing memory of a good death or a hard death. Some of these stories had been kept below the surface for decades, and yet were as deep and vivid as if they’d just happened.
Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.
With these experiences in common, Ms. Goodman and others established a nonprofit and a website, and they offer a "Conversation Starter Kit" for how to begin -- and continue -- thinking about what you want and how to share personal values and choices with family members. The kit is free, downloadable, and you can take notes and tailor the plan easily.
Many of my own friends and working colleagues have stories to share about "end of life" decisions with their parents. (Perhaps because I teach and write about aging, I get more than the average number of opportunities to hear from a lot of people about how well things are going on the homefront....) It seems like a "conversation about the conversation," shared among friendship groups, or workout-groups, or workplace groups, might facilitate using the starter kit and working on the more personal family conversations.
Thanks to Professor Laurel Terry for sharing these links!
Wednesday, July 1, 2015
From the June 22 issue of The New Yorker magazine, an interesting, thorough -- and ultimately devastating -- account of recent developments in "death with dignity" movements around the world. The article introduced me to Wim Distelmans, described as "an oncologist and professor of palliative medicine at Free University of Brussels," and "recognized as a leading proponent" of a 2002 Belgium law "that permits euthanasia for patients who have an incurable illness that causes them unbearable physical or mental suffering."
In The Death Treatment, author Rachel Aviv uses the diary-based history of a 60+ year-old woman who struggled with depression, eventually losing her levensperspectief, a Dutch word "that refers to the sense that there is something to live for," to illuminate questions about the scope of any appropriate limits on self-directed death. The article makes clear that "lawful" self-directed death can have long-range consequences for surviving family members, drawing upon a son's challenge to permissible euthanasia in Belgium as the evidence. A very worthwhile, but not easy, read.