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.