Knowing When (or Not) to Let Go

On the date and in the hospital where I was born 58 years ago, my friend was allowed to die. It’s what he had said he would want, it’s what the doctors said was occurring, and it’s what his family courageously and compassionately allowed.

My friend didn’t want the catastrophic stroke that had left his brain so badly and inaccessibly damaged. He didn’t want to die and leave his two daughters fatherless. But in the event of a catastrophic event, he didn’t want to exist unable to think, speak, or care for himself. And this was known because he had told another friend and a brother, who were able to communicate his wish when he was unable to, and in so doing helped others in my friend’s family to allow his passing, and not prolong it indefinitely and artificially.

I followed this story from the East Coast as it evolved in Southern California, and so I don’t have any real sense of the truth of decision-making after my friend’s sudden collapse and emergent bleak prognosis.

The timing was striking, not for the simple coincidence of his dying on my birthday, but because my work with Community Voices in Medical Ethics had me following the case of Hassan Rasouli in Ontario, Canada. 

Rasouli, 61, has been on life support since Fall 2010, and for much of that time he has been under the care of a medical team in dispute with his wife and adult children over whether to continue keeping him alive. (More here)

The medical team believes it should make the decision on whether to discontinue life support, even if the patient’s surrogates disagree, and is attempting to have a court establish that as legal fact. 

The day after my friend died, lawyers for both the medical team and the Rasouli family made their case before the Canadian Supreme Court, which will rule in a case with potential legal ramifications from the UK to the US. Cases concerning end-of-life medical care rarely make it this far in a legal system, because the patient rarely survives till the court date.

Which is a point the Rasoulis’ lawyer underlined with the Supreme Court in disputing that care is futile. “The treatment is 100 per cent effective,” the lawyer said. “It permits him to breathe.”

Lawyers for the hospital made this point: “The purpose of critical care medicine, including life-support measures, is to support the patient long enough to allow recovery from a reversible illness. Where, as in Mr. Rasouli’s case, there is no reversible illness from which he can or will recover, life-support serves no medical purpose.”

So who decides? In determining my friend’s fate, religion played a role in allowing him to be removed from mechanical life support. He was Roman Catholic, and as such would have considered human life sacred. The Rasoulis, devout Shia Muslim, no doubt would agree with that. And yet one man was removed from life support, the other remains on it. 

Community Voices, through its Community Ethics Committee, is just now concluding a lengthy study of medical futility, a phrase much simpler than all it is meant to imply. A determination of medical futility -- usually by the medical team, though sometimes by a terminal patient (who, for example, is ready to give up on chemo before the oncologist) -- usually results in agreement on revised goals of care. In the rare cases, though, there is not agreement. And then, who ought to decide?

This question is being asked all over the world, and is especially volatile now in the United Kingdom, where the hospice-inspired Liverpool Care Pathway for the Dying Patient is the focus of heavy scrutiny.

Given what I know of my friend’s death, what I’m learning about the Rasouli case and the controversy over the LCP, I found a blog written by Philip Berry to be illuminating. Berry is a writer and National Health Service consultant.

Berry wrote: “We don’t ask individual doctors about their religion – it is a personal matter. But religion and medicine are clearly interlinked, and this relationship is most apparent when decisions have to be made near the end of life. At this time religion can influence the expectations of patients and the management decisions of doctors. If a disparity exists between those two parties, and if the fundamental nature of belief does not allow one to accommodate to the other’s preference, conflict can occur.”

Berry explores four questions in particular: Do doctors vary in their practice according to religiosity? Is such variety acceptable? If not, should doctors have to disclose their beliefs to patients? And, should doctors disclose their beliefs in public debate on end of life issues?

He cites a poll finding non-religious doctors “40 percent more likely to sedate than religious doctors” and religious doctors less likely to “discuss end-of-life treatment option with their patients.”

“Variability is a fact of life, because all doctors are different and the practise of medicine cannot be completely protocolised,” Berry writes. “Medicine draws on human qualities from its practitioners, and the advice that each doctor gives is modulated by their own psychological and cultural make-up. We cannot expect or desire uniformity, for that would encourage doctors to perform at a remove from the very internal motivations that brought them to the vocation.”

Later, he adds: “If religion is driving much of the current argument about end of life care, we must ask ourselves to what extent these preoccupations can be allowed to influence national policy.”

Berry is a proponent of the LCP and more generally quality care for the dying. He is also an atheist, which doesn’t stop him either from noting that “Dame Cicely Saunders dedicated her life to the development of palliative care following a conversion from agnosticism to Christianity” or crediting the palliative movement’s role in making “the UK's reputation for the care of dying patients ... unsurpassed.”

As Community Voices tries to sort through questions of medical futility and possible ways to resolve the intractable disputes, our running joke is that our endeavor is itself an exercise in futility. But, of course, it’s not a joke, as I was reminded when my friend, as he had said he’d want, was allowed to die.

Why I'm Pulling the Plug on "Pulling the Plug"

I think I’ll ban “pull the plug” from my usage, much as I did years ago, as a journalist, and learned from Strunk & White that people, in print, ought never to “pass away.” They die. Simple and sad as that. Sometimes they die after they are disconnected from a ventilator, feeding tube or other life-prolonging measure.

I’m thinking about this as I begin research into the Liverpool Care Pathway, an apparently effective means of allowing a dignified death while keeping a patient’s wishes and best interests in mind throughout end-of-life medical care -- but which has become quite controversial. Some UK media seem to have gotten aboard the “death panel” band wagon in a big way.

But the reason “pull the plug” is on my mind is that it’s the phrase someone on the West Coast used to describe to me what occurred earlier this week to a mutual friend. He’d been on life support for more than a week, after he suffered a stroke and collapsed in his home. That damage to his brain is irreversible and, despite the suddenness of this catastrophic event, his family has accepted that he would not wish to continue life mechanically prolonged in a vegetative state. He had said as much to another mutual friend on more than one occasion. 

I’m sad for my friend and his extended family, and I admire them, and the friend who had the foresight to engage in the conversation about values. I know nothing of the dialogue that has taken place with doctors in making the decision to allow him to die, and perhaps the decision was easy to make, relatively speaking, and it was clear to all that there would be no recovery of any meaningful kind. And yet my friend is from a Catholic family, as am I, and agreeing to the removal of life-sustaining technologies and forced nutrition is no simple step.

When I learned of my friend’s fate, I had just read for the second time UK physician Max Pemberton’s recent piece in The Telegraph, “The Liverpool Care Pathway Leads Away From Pain.” There’s no telling how many times I’ll read it before I’m through. I want to know it by heart. It’s that good.

The Liverpool Care Pathway strikes me as the sort of thoughtful and bold approach to care at the end of life that is very much needed in the United States, especially for those for whom the dying process is prolonged and full of uncertainty.

It needs to be thoughtful because, well, it’s about care of the dying, who have a way of surprising us and not dying when we think they will, and whose own wishes for how they die, if known, can range from "do everything to keep me alive" to "if I'm a vegetable, let me go quickly." And it needs to be bold to overcome the “death-panel fear-mongers,” to borrow a phrase from a recent New York Times editorial. (A thoughtful and bold editorial, I might add.)

Such fear-mongering isn’t unique to the U.S. Indeed, Pemberton’s piece is in part rebuttal to coverage that has made the Pathway out to be more about economics than compassionate care, which, if true, would indeed be unfortunate. It does appear that in some cases, consent was not well informed (good communication shouldn’t be a speciality in medicine). Lawsuits have been filed, and an independent inquiry is under way. (More here)

The Pathway has in some UK media acquired the nickname “death pathway,” which is not meant as a compliment. But my sense is that the Liverpool Care Pathway has a lot more to do with compassionate care and dignity in death, and Pemberton makes this case well.

Also worth reading regarding the Pathway, and the key role nurses play in making it work, is a story in NursingTimes.net. The author, like Pemberton, writes of personal experience with the Pathway, and one notably helpful and compassionate palliative nurse in particular. 

“The LCP is not the problem, but its implementation, in some cases, is. Those cases are entirely unacceptable and should face the full fury of the media and patients when they happen,” writes health journalist Shaun Lintern.

“Nurses grappling with life and death issues face incredible pressures; you go into this job to save lives, not to watch them fade away. One possible reason for the lack of communication with some families could well be a reluctance of some nurses and junior doctors to have those incredibly tough conversations with patients and families.”

I'm grateful that this does not seem to have been the case with my friend and those in the thankless position of speaking for him about how he'd wish to die.

Mayo Clinic's Advice on EOL Dialogue

The Mayo Clinic has come up with these guidelines for engaging dialogue on end-of-life medical care:

Clear communication: Early and clear communication between health care providers and patients or their surrogates is the best way to avoid disagreement over whether medical care should continue. Recent studies show that more than 95 percent of such disputes are resolved through mediated meetings involving physicians and patients/surrogates.

Choose objective surrogates if patients cannot represent themselves: The surrogate's role is to stand in the shoes of the patient and suppress his or her own judgment in favor of what the patient would have done. However, it is important to acknowledge that medical surrogates often struggle to balance their wishes for the patient with the patient's own wishes. Studies have found that not only do many surrogates fail to accurately predict a patient's treatment wishes, but when asked to resolve disputes, they are more likely to show bias by overestimating the patient's desire for continued treatment.

Involve third parties when necessary: When health care providers and patients or their advocates cannot agree on end-of-life care, involving a third party becomes necessary. Beginning in 1992, the Joint Commission, the largest hospital accreditation organization in the United States, required hospitals to establish procedures for considering ethical issues. Hospital-based ethics committees have been the most common response to this requirement.

For more on Mayo work in this area, see http://www.mayoclinic.org/news2012-rst/7183.html

Eaves-Tweeting (the Future of Medicine)

Interesting recent tweets discovered via hashtag:

1. Medical team of future will be more flexible, female, more team-based, more non-medically trained. (#futurehospital)

2. Does fear of litigation / defensive medicine drive rising demand for secondary care? How can this be addressed? (#futurehospital)

3. Forty percent of young physicians report that they would not go to medical school if given the choice again. (#meded)

4. Why Would Anyone Choose to Become a Doctor? Because they can have the great privilege of doing palliative and hpm. (#palliative, #hpm)

5. Drug reps should not be welcome ... and the doctors working there shouldn't be on industry payrolls. (#futurehospital)

6. Educating your patients: it's not just about a brochure; it's about initiating a dialogue (#meded)

7. Over a quarter of medical registrars are concerned their workload is unmanageable. (#futurehospital)

8. You ARE a person. You HAVE a DNR order. You are not your code status. (#palliative, #hpm)

9. With hospice, people believe you're giving up instead of helping to transition or die w/ dignity (#hospice)

10. In my view issue of prognostication is a red herring. Will always be subjective. Issues of communication and education are vital (#LCP)

Eaves-tweeting (Boise hospitals)

Saturday’s New York Times story headlined “A Hospital War Reflects a Bind for U.S. Doctors” inspired interesting dialogue and commentary on Twitter. See the original story here. The story tells of how the national hospital efficiency trend is playing out in Boise, Idaho.

As the Times reported, “Boise’s experiences reflects a growing national trend toward consolidation.”

Here’s a glimpse of the reactions on Twitter:

Atul Gawande ‏@Atul_Gawande

On the Boise battle: 1. W/o transparency about quality, Big Med, under fee for service, produces more care & cost.

Paul Levy ‏@Paulflevy

@Atul_Gawande Agree that transparency is key. How setting an example in Boston with real-time metrics, not 2- to 3-year old data?

Atul Gawande ‏@Atul_Gawande

2. To produce real teamwork for patients, we're switching to Accountable Care--i.e., lump sum payment--which makes Big Med necessary.

Paul Levy ‏@Paulflevy

@Atul_Gawande And it doesn't matter if it is fee-for-service or global. Overall price levels rise when monopolies take charge.

Atul Gawande ‏@Atul_Gawande

3. There's a chicken-and-egg problem here, therefore. Change payment systems first and then bring in consolidation (#BIgMed)? Or vice versa?

Paul Levy ‏@Paulflevy

@Atul_Gawande Focus on payment model is misplaced when monopolies exist, e.g., Partners gets higher global AND fee for service rates.

Atul Gawande ‏@Atul_Gawande

4. In the meantime, without real data about actual quality and cost--i.e., transparency--everyone's flying blind.

Ann Neumann ‏@otherspoon

NYT article on hospital mergers; No mention what Catholic expansion means for patient services.

For a different perspective on the modern efficient hospital, see Dr. Victoria Sweet’s powerful book, “God’s Hotel” (blogged about here).

The Wisdom of a Dying Physician

Viewed from this side of the Atlantic, the controversy playing out in the United Kingdom over the Liverpool Care Pathway is as familiar as it is perplexing. It is in the United States, after all, where certain politicians and media have made it controversial for Medicare policy to pay physicians to discuss their end-of-life wishes with patients. This makes no sense, discouraging literally vital dialogue, and making it more difficult for physicians to built relationships of trust with patients.

Don’t take it from me. Listen to Dr. Kate Granger: “It is not fancy technologies or complicated research that is going to fix the problem. It is quite simply some good quality talking and a culture and environment that allows this to happen.”

Dr. Granger is a physician in the United Kingdom. But she is also a patient, one with a terminal cancer diagnosis, “musing about life & death” on her Wordpress blog.

She writes: “One of the reasons I have been so open about my own dying both in public and in private with those I love is that I believe openness is inextricably linked to achieving ‘a good death’ and perhaps more importantly ‘good grief’ for those left behind.”

Most recently, Dr. Granger has become troubled by a spate of negative press coverage in the UK about the Liverpool Care Pathway, a widely adopted means of addressing the wishes and best interests of a dying patient that has been around for a couple of decades, but has only now become controversial. It has been irresponsibly cast, in terms that will be familiar to followers of America’s “death panel fear-mongers,” essentially as a vehicle of patient abandonment for financial reasons. It has become known to some media as the "death pathway."

Dr. Granger writes of “a perception more and more that everything done in the (National Health Service) is underpinned by monetary factors, bed pressures and lack of resources and that these issues motivate us as doctors rather than our patient’s best interests.” This, she writes, is “something I find very sad as I go to work primarily to look after people.”

As Dr. Granger notes, it would appear that recent failings of the LCP stem not so much from the program itself, which has an impressive record of compassionately allowing terminal patients to die, as desired, with dignity and at home. The failings are in communication.

“The irresponsible handling by some of the media has left us as clinicians in a hugely difficult and worrying place,” she writes. “As a doctor I would hope that the relationship I have with my patients and their families is based on a solid foundation of trust; a trust that I am there solely to act in their best interests and to care for them. As a patient myself I trust my own GP and Oncologist implicitly. But when the press and sometimes the politicians start to undermine this trust then we are left in an extremely worrying and dark situation.”

Dr. Granger’s solution: involving palliative care specialists earlier. As in the US, palliative care has been shown in the UK to improve quality of life for a terminal patient, and even to add time.

“I do not believe the problem itself has anything to do with the actual LCP,” Dr. Granger writes. “I think the solution is really very simple and yet difficult to achieve. When someone is diagnosed with a condition that is going to limit their lifespan such as heart failure, dementia, metastatic cancer or MND for example I believe early, open and honest discussion about prognosis is a necessity. This allows the patient choice and some degree of control over what will happen in their life.”

And communication with a patient is just one aspect of the palliative speciality.

“In my model the Palliative Care practitioner would be in the clinic when the patient is first diagnosed and work in partnership all the way with that patient,” Dr. Granger writes. “I am reminded of a quote from Dame Cicely Saunders, the founder of the hospice movement: You matter because you are you, and you matter until the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die.”

A Medicare Mistake Worth "Giving Up" On

Evidence is mounting that Medicare policies saddling hospice with "giving up" baggage need to change.

Recentlyi Dr. Ira Byock described Medicare payment decisions that, while well intended, created an unfortunate either-or choice between therapy and hospice, which apparently is what gave hospice such a bleak reputation in the first place.

Would smarter spending allow Medicare payment for hospice while therapy continues? Given the need to cut costs in health care, that may seem counterintuitive. And yet palliative care increases both quality of life and time, studies indicate, and not only for the terminally ill, and does so cost-effectively. 

Significantly, the American Cancer Society took note of this when it named Dr. Diane E. Meier one of four recipients of its Medal of Honor. Meier teaches and practices at Mount Sinai in New York and is director of the Center to Advance Palliative Care. She received the award for "Cancer Control in recognition of her pioneering leadership of the effort to bring non-hospice palliative care into mainstream medicine."

As Meier’s award notes, palliative care is not exclusive to hospice, and yet it is a big part of what makes hospice so effective.

Jane Brody touched on this on Monday in the NY Times Personal Health column. Brody writes about a study in the New England Journal of Medicine finding that most patients with Stage 4 lung and colon cancers did not understand "that chemotherapy was not at all likely to cure their cancer." Without this understanding, the authors note, consent is hardly informed.

In many cases, continuing chemotherapy rules out hospice.

Brody writes: "When patients pursue chemotherapy under the false belief that they still have a chance for a cure, it often delays their transition to the comfort care of hospice. When patients spend only a few days or a week in hospice, caretakers don't have enough time to get to know them and their families and offer the physical, emotional and practical benefits hospice can provide."

Also Monday, in the Boston Globe, a story by Karen Weintraub began: "People often have one regret about hospice care: that they didn't get it sooner."

Some don't get it sooner because they believe choosing hospice means giving up hope. That unfortunate belief is fueled by Medicare policy that makes patients choose between therapy or hospice. 

http://www.bostonglobe.com/business/2012/11/19/trying-sell-american-public-hospice-care/W5fsBZ3Mk6hHLIyJn3xcQL/story.html

As hospice executive Mark M. Murray tells Weintraub about hospice, "It's not about death and dying, but it's about improving quality of living, not just for the patient but for the entire family."

Learning From Unethical Experiments in Guatemala

Elise Viebeck is reporting for The Hill that the Obama administration, through the Presidential Commission for the Study of Bioethical Issues, “is urging students to learn the history of U.S.-backed medical experiments in Guatemala, which deliberately exposed patients to sexually-transmitted diseases.” See the full story here. 

In a report to a subcommittee of the Presidential Commission, the Community Ethics Committee made these recommendations related to the Guatemala study:

That empowered, informed and truly independent Participant Advocates be assigned to research participants and that those advocates stay with individual participants from the initiation of the informed consent process, through the clinical trial, and for follow-up after the trial closes.

That local Community Groups be included as an authentic voice in the review, monitoring and management of clinical trials.

That, while recognizing that numerous laws and regulations contain enforcement mechanisms for breaches of clinical trial protocols, real and significant Consequences, such as loss of licensure and public censure, be

imposed upon individual professionals involved in research which is not ethically supportable, as a way to minimize both community and individual harms.

And, given the pervasive nature of clinical trials in current medical practice, that medical schools require a Course in Medical and Research Ethics and clinical trial protocols.

Read the CEC’s full report to the Presidential Commission here. 

Journalists & Best Interests

Stories that grabbed my attention while thinking about when allowing death is in the "best interest" of a dying human:

Much of what has caught my eye, especially via Twitter, is the work of  death-panel bloggers and social-network flame-throwers. I won't repeat their insights here. Thankfully, there also are journalists writing thoughtfully and insightfully about care of human beings as they near death, and about those with the ever-more-complicated job of delivering that care.

One of the best is Lisa Krieger of the San Jose Mercury News, who has written extensively about the quandary created by the ability to keep patients alive but not cure or effectively treat what is killing them. Her ongoing series is titled "The Cost of Dying."

Most recently, Krieger wrote this recently of feeding tubes:  “Decades after the tube achieved widespread use for people with irreversible dementia, some families are beginning to say no to them, as emerging research shows that artificial feeding prolongs, complicates and isolates dying.”

Krieger writes both from personal experience and as a first-rate journalist. The recent piece and earlier ones are well worth discovering.

Another newspaper, the Courier Press of Kentucky, quoted Dr. Ira Byock as saying: "We are not doing end-of-life care as much as brink-of-death care. This has to change."

Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center in New Hampshire, was in Kentucky speaking about hospice care.

"The problem with hospice care in America is that you have to be dying to get it," he said. "In fact, let's be honest, it's not enough in America to be dying to get hospice care, not under Medicare. You also have to agree you are dying — something that many of my patients are not ready to do."

Short-sighted Congressional budget decisions in the 1980s, Byock said, made hospice care mutually exclusive from Medicare Part A and B. Though it made sense at the time, he said, "we now know it was wrong."

When patients must choose between hospice and treatment for their disease, "They stop. They wait. And they come to hospice very late."

(Note: In the run-up to the close defeat of Massachusetts Question 2: Prescribing Medication to End Life, Byock wrote one of the more powerful medical arguments in opposition. And early this year, he had this memorable and illuminating exchange with then-presidential candidate Newt Gingrich.

The advance-directive movement is growing in Canada. A program rolling out now in New Brunswick continues the eastward migration of programs from British Columbia and Alberta.

The National Post reported that Moncton's Horizon Health Network, New Brunswick’s largest health authority, is encouraging Canadians to make their care wishes clear before they lose the ability. More specifically, Horizon will drop its policy of do or do not resuscitate and instead provide patients four options — "pull out all the stops to save me; don’t revive me but give me intensive care unit care; don’t bring me back to life but keep offering relevant treatment; or just keep me comfortable until I die."

Patients will discuss the options with a member of the care team and a physician will sign the order, according to Dr. Pam Mansfield, the clinical director of palliative care at the health authority.

A cautionary note was sounded by Margaret Somerville, the founding director of the Centre for Medicine, Ethics and Law at McGill University.

“I’m sure they’ve got good intentions in doing this, I’m sure they’re wanting to be guided by the patient’s wishes and I guess best interests,” Somerville said.  “But I think we’ve got to be very careful to not reduce a very complex relationship that involves critical decision making to something that appears like a simple formula. I don’t think that’s right and I don’t think that’s going to work.”
For Mansfield, though, this new policy encourages conversation and getting at the patient's wishes and best interests.

Louise Hanvey is project manager for the national Speak Up campaign run by the Canadian Hospice Palliative Care Association.

“The literature tells us clearly that if people do advance care planning, they have a better quality of life at the end of their life, they’re more likely to have their wishes respected, their families have less stress, anxiety, depression,” Hanvey said. “And there have been a couple of studies that show it costs the healthcare system less money because people don’t get procedures, interventions that they didn’t want in the first place and that, in fact, might have been futile in the first place.”

Dignity & the Importance of the Conversation

By a narrow margin, Massachusetts voters on Tuesday decided against making it legal for a physician to prescribe a lethal dose of medication to a terminally ill patient wishing to control the timing and circumstances of their death.

Is this decision a defeat or a victory? The answer probably depends on your personal definition for a death with dignity.

For the Community Voices in Medical Ethics, it is a defeat only if the conversation about compassion in end-of-life care ends with the election result. And it is a victory if this is only the beginning.

In researching the Death With Dignity Act, Community Voices and the citizens of its Community Ethics Committee came to no consensus, no simple yes or no, on the advisability of Question 2: Prescribing Medication to End Life.

What we did agree on was the extraordinary value to patients of palliative care services; we fully support the movement in Massachusetts and elsewhere to increase the role and influence of the palliative speciality.  

We also agreed that the conversation about how we die is of tremendous, transformative importance: in the doctor-patient relationship, among families, and for our society. 

The commonwealth has two great resources for keeping the conversation going: the thoughtful work of the Massachusetts Expert Panel on End of Life Care. And the Conversation Project. 

Massachusetts narrowly rejected a ballot measure on Tuesday. But we didn’t reject compassion for the dying. 

An Oregon Story: Living With Dementia

By Kathy Kaditz

In November 1997, Oregon became the first state to pass a Death with Dignity Act.  Popular support for the measure grew out of the strong libertarian tradition that has been part of Oregon since it became a state in 1859.  Opposition to the bill was seen as “coming from organized groups, out of state,” which was perceived as a negative. 

I know because I grew up in Portland, Oregon; I chose to move to Massachusetts in 1972, where I started my teaching career, married and had two children. Then, in 1996, my husband accepted a job in Portland, Oregon. We moved our teenaged children from Newton to Lake Oswego where our daughter attended four years of high school. We were able to relocate to Massachusetts in 2000. 

So, I was an Oregon voter who supported the Death with Dignity Act when it was passed. Since 1997, 935 prescriptions have been written. 596 people have elected to fill and use their prescriptions. About one in every thousand deaths in Oregon since 1997 has been attributed to physician-assisted suicide, or “medically induced death.” 

The group most likely to make the request are people who have terminal cancer, are over 55, are white, are 50% more likely to have graduated from college than the average Oregonian, were enrolled in hospice care and had some type of insurance. Nearly 7% were referred for psychological evaluation. 94% died at home. Nationally, roughly 67% of people die in hospitals.

Among people who requested the prescription, the greatest fears cited were loss of autonomy, loss of dignity and loss of enjoyable activities. Only 22.6% cited fear of poor pain management. The medical community in Oregon has become more supportive of the measure since its enactment. Public sentiment remains with the act. 

And now a personal experience about the limitations of the statute:

In 2010, at age 90, my mother, who lives in Portland, was diagnosed with early stage Alzheimer's. She had seen her father suffer through this disease; she saw the toll it took on her mother. She said she did not want to live when she could no longer listen to books or garden, and she wanted to die in her own home. She was adamant about the last point. 

Six months after her diagnosis, in my presence, my mother asked her physician for a prescription to end her life, which she could use in the future, when she “no longer had her wits about her or had to leave her home.” Her physician told my mother that she was not eligible for a prescription under the law. Her physician added that she was personally opposed to writing that prescription under any circumstances and appeared visibly annoyed my mother had made inquiry. On another visit, she again initiated the conversation with her physician; at which point her physician diagnosed her with severe anxiety, suicidal ideation and depression. She referred her for therapy. Her family was invited to participate, which we did. She went to four or five sessions before she terminated, stating to the therapist, “You can't help me if you won’t write me a prescription.”

Subsequently, a neuropsychological evaluation, an MRI, confirmed the Alzheimer’s diagnosis. We tried Aricept, changed primary care doctors and began experimenting with various anti-depressant and anti-anxiety medications. After six months we added an anti-psychotic medication to help with symptoms of agitation, anger, paranoia and delusional thinking. 

It took another year to find the right cocktail of medications to manage her behavior and stabilize her mood while maintaining her balance and mobility, with the goal of keeping her home. Currently she is is doing as well as can be expected. My brother and sister-in-law live with her; I travel to Oregon every eight weeks to relieve them. She has 48 hours of home care per week, the most we can afford. She qualifies for 24/7 care.

Her Alzheimer's has now progressed to the moderate stage; she is otherwise healthy. She has mentioned ending her life by refusing to eat or drink. However, she does not sustain that thought nor do I think she is she is capable of acting on it. 

She is 92, we can afford to keep her home through 2013. After that, her long-term-care insurance will only cover her in a residential facility. She has lived in her home for 63 years. It is likely I will have to file for guardianship to move her involuntarily. If she lives to be 96, not uncommon in her family, she will exhaust all her financial resources and we will have to apply for Medicaid to maintain her in a facility. Medicaid expenses are a significant factor in the federal budget deficit crisis. 

Meanwhile, she can no longer reliably identify her immediate family. She is losing the ability to fold laundry, an activity she has been able to do the last two years. She was a wonderful gardener; she can no longer pot a plant even if you show her first, give her with step-by-step instructions and caregiver assistance. 

This is not what she wanted. This is what she did not want to happen to her or to her family. 

I hope by the time I am at her age and stage of life, I have more legal choices than she does now and the statute is broadened. To some this is a dreaded slippery slope. To me, it would be a relief.

I would like to introduce you to my mother. In September 2011, our daughter Emily wanted her grandmother to escort her across the stage to receive her white coat, as a first year medical student at U. Mass. My mother did not meet the criteria to be an escort… the ability to follow instructions. However, Chancellor Collins, kindly made an exception. The extra effort was rewarded and my mom almost followed directions; she did miss the memo about exiting the stage promptly as you can see in this clip  (you'll need to fast forward to 1 hour, 13 minutes, 16 seconds).

This year, Chancellor Collins’ assistant asked Emily if he could read her thank you note at the close of this year’s white coat ceremony. This is an excerpt from his speech.

“Following last year’s White Coat Ceremony, the event’s organizers received the following thank you from a student who had requested that her grandmother, with the advances of Alzheimer’s disease, be allowed to present her with her white coat. I am writing to tell you how grateful I am, if possible, more now than then, for everything you did to allow my grandmother to participate in the White Coat Ceremony. As the grandchild with the strongest bond to my grandmother, I was very much unprepared for the progression of her disease . . . She returned to Oregon with moments of clarity that included knowing that not only had she put my white coat on, but she “wore high heels, not old lady shoes.” Until a few weeks ago, she knew who I was only because of her excitement about being involved in the ceremony and having a granddaughter in medical school. Now, she has, well, regressed . . . None of us are who we should be to her . . . For the rest of my life I will never forget that my last true visit with the grandmother I have always known and loved was the weekend of the White Coat Ceremony . . . that memory . . . will be with me forever.”

The day after the white coat ceremony, my mother had her first grand mal seizure. She was sitting on a counter top stool in our kitchen and toppled onto her head, still in the chair without breaking her fall. She was taken by ambulance to the hospital. She required stitches and was kept overnight for observation. An EEG revealed that the seizure was more likely related to her dementia and not her medications.


Kathy Kaditz is a founding member of Community Voices in Medical Ethics and the Community Ethics Committee.

Not All Opposition to Question 2 Is Slippery

I’m disappointed in Art Caplan.

The director of Medical Ethics at New York University is a go-to source for journalists and others needing clarity, opinions and insight into complex ethical questions in medicine. He also teaches and writes extensively on bioethics.

This week, Caplan endorsed passage of Question 2 in Massachusetts on the NBC News blog Vitals, But that isn’t what disappointed me.

Reading Caplan, I expected a serious counter-argument to strong and well considered pieces I’ve read recently by Lachlan Forrow and Ira Byock, both palliative physicians and ethicists, Forrow at Boston’s Beth Israel Deaconess Medical Center, Byock at Dartmouth.

Forrow takes no position for or against Question 2, the effort to legalize what is alternately known as death with dignity or physician-assisted suicide, but he makes a compelling case for why it should be decided by legislators, not voters. But Byock is clear in his opposition, and why.

Forrow and Byock are of such standing in medicine that Caplan must know of them, and their criticisms of Question 2. Closer to home for Caplan, Dr. Zeke Emanuel recently listed in the New York Times his own reasons for opposing the practice. 

And yet, according to Caplan, other than medical organizations opposed on grounds that Question 2 changes the physician’s traditional role as healer, the only opposition of note fits neatly into the category of slippery slopers.

“The critics are worrying about a shift to mass suicide inspired by heartless doctors and families pressuring dying patients to end it,” Caplan writes. “That has simply not happened in Oregon or Washington. There is no persuasive evidence that the dying are being rushed, duped or bullied to die by anyone.”

Perhaps this is an effective argument against slippery slopers, and it’s one that Forrow probably would agree with. He has written that with Washington and Oregon as predictors, neither defeat nor passage will have a major effect on care in Massachusetts.

And yet, “I have serious misgivings about whether a ballot initiative is the best way for the people of Massachusetts to make decisions about profound, complex  issues,” Forrow writes. “My misgivings are especially great when, as I believe is true of Question 2 next Tuesday, many people are going to have to cast their vote without having had the time, opportunity, or help they needed to develop a clear and accurate understanding of what those issues are.’’

Advocates for both sides are distorting the essential questions, Forrow writes, with “irresponsibly exaggerated claims that are designed to frighten you into voting one way or the other. If I didn't know better, I would be more frightened than ever about myself or a loved one ever having a so-called terminal illness.”

Forrow has a special interest in improving end-of-life care in Massachusetts. He was co-chair of the Expert Panel on End of Life Care, which has produced an extensive and impressive report for the governor. It details many ways the state could improve its care of the dying, none of which are expediting their death.

Many of the Expert Panel’s points would align with those made by Byock in the Atlantic in arguing why progressives ought not support Question 2.

Byock writes: “An authentic progressive agenda for improving the way we die would begin by tying physician and hospital payments to quality of care, not quantity of tests and treatments, and doubling the ratio of nurses and aides to residents in nursing homes. ... Also high on a liberal agenda should be repealing regulations that require sick people to give up life-prolonging treatments to receive hospice care. Finally, it's past time to insist that every medical student receives adequate training and passes competency tests in symptom management, communication and counseling related to serious illness and dying -- skills that most physicians lack today.”

Why not make lethal prescriptions part of this? “Giving doctors lethal authority,” Byock writes, “would address none of the deficiencies in medical practice, health care financing or social services that bring ill people to contemplate ending their lives.”

As an ordained minister, the former TV journalist Liz Walker might be forgiven a slippery slope argument, but her opposition is not of the slippery sort, either. Aspects of Question 2 that trouble Walker include the lack of a requirement that patients speak to a mental health specialist, a palliative specialist, or even tell their families.

“Patients could choose to end their lives without ever talking to a spouse or family member,” she writes. “Supporters of the initiative call it a ‘compassionate choice’ but leaving families in the dark and patients on their own on this profound matter strikes me as anything but compassionate.”

Some will vote for purely slippery-slope reasons, but some critics of Question 2 are on firmer footing, and Caplan ought to have acknowledged that.