Palliative Roles & Responsibilities of Nurses

After spending a few days reading and blogging about Amanda Trujillo, the nurse and patient advocate in Arizona fired for overstepping bounds and informing a patient about hospice, I was ready to back turn to other research related to the work of the Community Ethics Committee. 

But today as I read “Palliative Care in the ICU,” a roundtable discussion newly published in the Journal of Palliative Medicine, I couldn’t help but think of Trujillo and nurses elsewhere who have rallied to her defense.

Much is unknown about what transpired at the Banner Health hospital the day last spring when Trujillo’s involvement in patient advocacy angered a physician and got her fired and otherwise barred from nursing in Arizona. But what does seem clear is that she acted in the best interests of the patient.

And so, as I read the comments of roundtable participant Kathleen Puntillo, R.N. and Doctor of Nursing Science in the Department of Physiological Nursing at UC San Francisco, regarding “the responsibilities of nurses and their valuable roles,” I thought immediately of Trujillo. I don’t know whether Puntillo is even aware of the Trujillo case, but her words were remindful of Trujillo’s own in explaining her actions.

“If nurses really are reminded of their responsibilities to be active members of all aspects of patient palliative care, then I think this gives them a framework from which to draw some confidence,” Puntillo said. “By that I mean that if you look at any of the major professional nursing organizations, the American Nurses Association, the American Association of Critical Care Nurses and some of the European nurses' organizations, over and over again they emphasize that the nurse's primary commitment to the patient is not just a right but a responsibility, this one duty trumps all others. We really must be more involved in palliative care. I think that lays a good foundation for nurses.

“Of course, the roles that nurses play are extremely important roles. Nurses are generally competent to take on a larger role, to discuss patient status with patients and families since they have more contact with patients than other clinicians in the ICU. They work frequently with dying patients. They hear discussions and conversations among family members, patients and multiple teams. So they do have the ability and the exposure to be involved.

“Now, to be a little bit more specific,” Puntillo continued, “nurses can, for example, be the leaders in interdisciplinary committees or work groups to improve palliative care efforts. They can easily, and often do, identify potential obstacles for improving palliative care in their particular ICU. They can be leaders in enhancing teamwork that is so important to palliative care interventions and efforts. They can identify work processes that will help to integrate palliative care interventions and so on and so forth. So nurses have tremendous roles to play.

“Within a family conference in which patients and families interests and needs are discussed, there are many specific things that nurses can do such as listening, facilitating, supporting the expression of empathy, and helping after the meeting to continue those conversations and clarify with other health care providers, as well as with family members who may not have heard everything during that meeting.

“Finally, I want to make one more point that nurses can really guarantee a patient's dignity or their right to respect and ethical treatment, because a lot of times patient dignity is lost due to their dependency, their symptom distress, privacy boundaries, and their feeling of being a burden to others. Nurses have a tremendous responsibility and right and role in this whole aspect of palliative care.”

Along with Puntillo, six others participated in the roundtable, moderated by Dr. Judith E. Nelson, of Mount Sinai School of Medicine in New York. The hearts and minds involved in this roundtable are impressive, and I’ll write more about their broader thoughts later. 

What People Talk about Before They Die

Hospice chaplain Kerry Egan's piece says it all - our experience of God is in community, in family, however defined, however seen or unseen that may be.

"We don’t have to use words of theology to talk about God; people who are close to death almost never do. We should learn from those who are dying that the best way to teach our children about God is by loving each other wholly and forgiving each other fully -- just as each of us longs to be loved and forgiven by our mothers and fathers, sons and daughters."

Happy Lord's Day

Advocacy-Based Medicine?

The case of Amanda Trujillo is compelling for two reasons. Amanda exhibited an apparent strength of character in wanting to make sure her patient was fully informed. Perhaps more to the point, however, is the real strength of character shown by the patient lying in the bed and making the hard decisions about the benefits and burdens of transplant medicine in her particular life, standing up for her specific goals of care at what would appear to be near the end of her life.

There has been much written among the nursing community in response to Amanda's situation, with a focus on the nurse's role as patient advocate. And I certainly agree. But I also share with you this excerpt from a recent piece by Dr. Danielle Rosenman posted on another blog -- an essay not focused on Amanda's situation but applicable nonetheless.

"Healing takes place through the relationship between doctor and patient. The foundation of that relationship is trust. The patient trusts us with the most intimate details of his life. She trusts that I am competent and caring, that I’m giving her the best care I can, that I will respect his privacy, that I will listen with full attention and an open mind. He trusts that I will tell the truth, ask for help when needed, and that I will never abandon him. I, in turn, trust my patient to tell me as full and accurate a story as possible, to be clear about what she needs, to cooperate with the treatment plan and follow-up."

Once we enter the doors of a health care facility, those of us from the outside "community" rely on advocates for our very lives - nurses and doctors, friends and family. But we also must become our own best advocates.

Especially in the new health care world which lies ahead, we as patients will need to step up and let everyone around us know who we are and what we want. The medical community is trying to learn how to listen. We need to learn how to speak.

Join The Conversation and get ready to be your own best advocate!

#NurseUp

Remember the name Amanda Trujillo.

Amanda Trujillo is a transplant nurse and patient advocate in Phoenix, Arizona. That is, she was.

Trujillo was fired in Spring 2011, lost her license, and cannot at present hold another nursing position in Arizona. And it seems that she was fired for being a transplant nurse advocating for a dying patient. Calling it ironic doesn’t do it justice.

Trujillo’s advocacy was either in defiance of, or at least without regard for, a transplant physician who had other plans for the patient that involved surgery and certain realities of post-surgical care about which the patient was not aware. Trujillo admits that the physician’s concerns were not hers, and she clearly has strong feelings about how unaddressed revenue pressures can compromise institutional ethics and practices. What also is clear is that the best interests of the patient were Trujillo’s priority. Which is pretty much what I want in a nurse.

Trujillo apparently informed the patient about alternatives. More to the point, she had an open and honest dialogue about the patient’s wishes. What would seem to be a requirement for informed consent was somehow against the practices of this physician and Banner Health, the corporate owner of the hospital. And the physician became irate that the patient wanted to pursue alternatives to surgery.

Before the age of social networking, it would be easy to imagine this story never seeing the light of day, and Trujillo struggling in anonymity as an unemployed mother. But the blogosphere and Twitterers have recently become sufficiently engaged in Trujillo’s case to force postponement of a hearing that was scheduled Tuesday at the Arizona State Board of Nursing.

There is something of an Occupy Patient Advocacy building among social networking nurses, and at their center are Kevin Ryan and his colleagues at innovativenurse.com, whose open letter of support for Trujillo to the Arizona nursing board has gone viral, as has Trujillo’s own letter. Search the hash tag #NurseUp for a sense of this movement.

Ryan wrote: “It appears that Amanda Trujillo evaluated the health status of her patient based on her own clinical assessments and also data collected while being treated by the medical team at Ms. Trujillo’s place of employment during this time. It also appears from the information that Amanda Trujillo provided health teaching, counseling, and advocacy for her patient, which to my understanding of the Nurse Practice Act is well within her scope of practice.”

Ryan added: “I am not in any way assuming that the treating physician was negligent, however considering that this is, and should have been a collaborative approach in the patient’s care, Amanda Trujillo was making her own nursing diagnosis based on her clinical assessment, which again to my knowledge is within her scope of practice as a registered nurse. She apparently discovered a deficit in her patient’s knowledge about their treatment options, and it appears that she acted ethically in supporting her patient’s wishes to seek additional information, and referred the patient to a case management specialist as per protocol.”

Trujillo says the hearing was postponed so that she could undergo a psychological evaluation. 

I’m blogging about this today as I try to clear space to listen in on the Conversation Project at Boston’s Institute for Healthcare Improvement, an effort to promote the end-of-life conversation. The Conversation Project essentially exists because Americans are so inept at discussing death. That today’s program takes place while a nurse fights for a career cut short because she engaged in such a conversation is more than ironic. It’s tragic.

I listened to an MP3 of an RN.FM interview with Trujillo, and found her to be eloquent, thoughtful, and to make a strong case for her personal ethics. At intervals throughout the interview, her young daughter competes for her attention in the background. 

Trujillo has been cut off from her former employer, and says “none of my colleagues will have anything to do with me.” She heard that her patient was denied a hospice consult. In the process of being fired, Trujillo says, she was grilled about definitions of hospice and palliative care. And she was told she was responsible for “messing up the hard work” of the doctors and staff -- by informing a dying patient about options.

Her story offers a troubling look into how a system discourages advocacy and open communication, with economics lurking in the shadows.

Wrote one nurse in a comment on Ryan’s blog: “How can the business of medicine or healthcare even consider replacing primary care physicians with nurse practitioners if no one can stop a doctor from intimidating a nurse, and having her fired because she educated or gave the patient a choice he or she didn't. What good is more education for nurses if we are going to be stopped and chastised when we do what our code of ethics demands that we do. That is to advocate and educate a patient.”

Another Social Networking Furor

Another controversy involving a transplant physician is playing out, this time in Arizona. It is similar to the Children’s Hospital of Philadelphia scenario in that the controversy exploded once it went viral via blog posts and Twitter. But this time the blogger is not the family, but a palliative nurse who, as the story is told, was fired and lost her nursing license after a transplant physician became irate when a patient chose not to have a scheduled surgery after discussing alternatives with the nurse.

Though the full and accurate story is yet to be told, it would appear the nurse lost her job for being a vocal advocate for the patient. 

The nursing blogosphere is alive with this developing story. Follow it via Twitter using the hash tag #amandatrujillo.

For more background, see: http://digitaldoorway.blogspot.com/2012/01/fellow-nurse-is-on-ropes.html

Hastening the Process

Massachusetts votes in November on legalizing physician-assisted suicide. But is that the right term for it? Is giving it another name euphemism inspired by compassion? Perhaps this helps in discerning an answer.

As a resident physician at Johns Hopkins, I find myself completely inundated with desperate pleas from people who wish to extend their lives, not shorten them. Why did Dr. Egbert decide to use his medical knowledge for assisting suicide instead of for saving lives, especially since so many methods for non-assisted suicide already exist?

LAWRENCE EGBERT: I do not assist in a suicide.  I help people stop their suffering. Lots of physicians are helping patients stop the suffering as I am sure you do.  I have taught for years at Hopkins and can tell you some of your fellow students have witnessed staff physicians helping their patient hasten the process. 

The exchange is from a compelling study of a PAS practitioner in the Washington Post. To read more, see:

http://live.washingtonpost.com/lawrence-egbert-assisted-suicide-120123.html

In the News: Outrage and Distrust

A judge in Massachusetts declares a pregnant, schizophrenic woman incompetent and orders her to undergo an abortion and subsequent sterilization “to avoid this painful situation from recurring in the future.” The judge’s orders are struck down on appeal.

A transplant doctor in Philadelphia tells parents their daughter will not receive a kidney transplant because she is mentally retarded.

Both reports are outrageous, agreed? Both are loaded with emotional and ethical complexity. And there's a lot more to each story than I've just recounted -- which is my point. What I’m struck by in considering the stories is how they’re being told.

I learned of the judge’s outrageous orders through a thoughtful and exceptionally well reported story by Peter Schworm in the Boston Globe.

The initial judge’s orders were surprising, but so was the relatively swift response of an appellate court in reversing them. I have to believe that if this story had involved impending death, rather than impending birth, the courts would not have moved so swiftly or conclusively. The record of courts is poor in responding decisively in cases of intractable disputes at the end of life, when attempts at life-saving or life-prolonging care are seen as medically futile. Patients tend to die, often after extended periods of agony, before the court date arrives. Meanwhile, the care team is left delivering therapies they don’t believe in. It’s no surprise so many nurses quit soon after such cases.

In the Philadelphia case, what I’m learning is almost entirely through outraged response informed mostly by a blog post by the parents. And a physician’s reputation is being destroyed based on one-sided reporting of a private conversation.

It is one-sided because of HIPAA, an important law that protects patient privacy and is responsible for all those posted reminders in hospital elevators and elsewhere not to discuss patients. That a doctor and hospital can’t come to their own defense is perhaps appropriate, but it’s a serious downside of HIPAA.

In the Boston case, the facts were in the public record because they’d been dealt with through a legal process. And the reporter clearly is a first-rate journalist. And so, while the judge’s decision was no less outrageous for the high quality reporting, and the information revealed was hardly in the privacy interests of a mentally incompetent person, the information was solid, based on public record, and the events were put into context.

In the Philadelphia case, the facts are limited, the conjecture widespread, and some of the blogging both plays to and feeds public outrage and distrust (one notable blog headline: No Kidney for You (if You’re “Mentally Retarded”). The life of a physically and mentally challenged child is at stake, so the emotion and urgency are understandable. And yet the information being reported seems highly suspect to me.

What is said and what is heard vary greatly in meetings with physicians concerning medical judgments and hard truths about loved ones -- influenced by the inherent stress of such conversations, the knowledge and power disparity, the sad range in physician competence as communicators, and the selective hearing of family members.

In the family room at Boston Children’s in Fall 2005, I heard a transplant physician say my daughter’s bone marrow was “dead.” My wife was at that meeting. She says this never was said. Today, I remember hearing it, and yet wonder if it ever was said. My wife will perhaps always remember one transplant physician as overbearing, all-knowing and insensitive; I remember lousy communication skills but otherwise straightforward with information I didn’t want to hear.  (My bias: My daughter was cured by the donated marrow of a stranger -- not to mention medical therapies routinely denied patients in my own childhood for lack of practitioners, availability and success.)

It may be that the Philadelphia transplant physician and social worker’s version will be accurately told at some point, and perhaps the true story will be of an uncaring, badly reasoned and unethical decision to deny an organ to a worthy recipient. But perhaps it will be more complex than that. I suspect that what the physician said, or tried to say, included hard (and hard-to-know) truths about quality of life and life expectancy. The parents’ blog post talks of the physician’s Peruvian accent; hard truths about life expectancy are difficult enough to hear for a parent without additional language challenges. 

The parents’ story is convincing and compelling. It may even be an accurate accounting of the meeting, not simply of their perspective: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Physicians are notoriously bad at predicting life expectancy. This is less the result of physician incompetence than our expecting them to know the unknowable. 

Especially in a year when Massachusetts voters will decide whether physicians ought to assist in the suicide of a terminal patient (again, expecting the physician to know how much time the patient has left), both stories are worth thinking about. The Boston Globe story, in particular, for its questions of competence, autonomy, best interests and choice; the Philadelphia stories for questions raised about HIPAA, rationing, the role of mental and physical ability in medical decision-making -- and the value of one human life.

Also worth reading are two pieces (http://huff.to/wCKQ5N and http://huff.to/wxnFSG) with opposing views on the Philadelphia case (the author of the latter piece, Susan Senator, is a personal friend of mine, and the reason I became aware of the case). 

Hospice Use UP, Length of Stay DOWN

Just wanted to pass along this recently-released data from the National Hospice and Palliative Care Organization - apparently more patients are entering hospice but for shorter periods of time.

Many of us have benefited greatly from the wonderfully supportive and compassionate services of hospice when family members were dying. So it saddens me to think patients enter the system later than they should. But I know that is the case - too many of my acquaintance have entered hospice only to die within days, receiving too little of the sensitive end-of-life care that was available. Hospice provides unique expertise in physical pain management for dying loved ones but perhaps more importantly, they provide extraordinary emotional and spiritual pain management for both patients and their families. And that benefit is life-lasting - those of us "left behind" live on with those memories of last moments and hospice provides the expertise to help that part of our narratives be as good as it can possibly be.

Assisted Dying, EOL Care & the Other Blog

Decision-making in end-of-life care is brutally hard to sort out. Often, the patients whose care inspires the CEC’s work no longer have a voice of their own; they’re human beings whose state of being has diminished, perhaps disappeared. They’ve a pulse but no purpose, existing in a ringing and beeping space between life and death. Where is the line between prolonging their dying and hastening their death? God only knows. And that’s the problem. We don’t all believe in God, or the same God.

From “A Blog on the Side,” at http://paulcmclean.wordpress.com/2012/01/14/a-blog-on-the-side/

How Long?

In looking at medical futility, one of the real difficulties is the lack of prognostic certainty. No one knows for certain how long a seriously ill loved one has left. So families struggle with balancing the decision to proceed with one more treatment option to prolong a life that may be imminently passing or to stop perhaps too soon. How much time does my loved one have left? How long will I have my loved one still with me?

A New York Times piece today reports on the medical community's attempts to come to more certainty in assessing a patient's time left and that is a good thing.

To live life fully and to say our goodbyes, it can help to have a better sense of "How Long" . . . and to know what are the best things to do in the meantime.

End of Life Care & Where to Draw the Line

Intractable disputes in end-of-life care are a problem of unyielding complexity and decreasing rarity. That much I understand. But as the Community Ethics Committee studies these disputes with a hope of providing guidance from a voice outside the medical profession, finding something useful to say is further complicated by the lack of a simple definition for a central term: medical futility.

And so I’m looking forward to reading “Wrong Medicine: Doctors, Patients, and Futile Treatment,” a second edition by physician Lawrence J. Schneiderman and philosopher Nancy Jecker and newly published by Johns Hopkins University Press. 

So far, all I’ve read is Thaddeus Pope’s review of “Wrong Medicine” in the American Journal of Bioethics. Few understand the problem like Pope, the blogger and law professor recently named director of the Health Law Institute at Hamline University School of Law in Saint Paul, Minnesota.

Pope opens his review with questions that underscore the enduring complexity of medical futility: “When may physicians refuse to provide medical interventions that might prolong the patient’s life? When should they refuse? When must they?”

According to Pope, the authors hope their work encourages and informs discussion in the medical profession and in the larger society about goals of medicine and the very nature of the doctor-patient relationship at the end of life. Here in Massachusetts, voters this fall will decide whether they want physicians and other carers involved in assisting suicide. So if this new edition engenders wide discussion, it is indeed timely.

In addition to that, the authors offer useful definition for medical futility. They encourage physician deference to patients and surrogates in assessing risks and benefits, and say autonomy should be overridden only when benefit is lacking. These definitions provide some clarity around the divergence of best interest and autonomy, and so hold great promise for the CEC’s work.

Pope writes: 

First, Schneiderman and Jecker offer a qualitative definition. They argue that treatment is inappropriate when the patient is permanently unconscious or otherwise unable to appreciate the effects of medical treatment. Without awareness and the ability to participate in the human community, such patients are not “persons” but mere “biological bodies.” Relying heavily upon Greek and Roman sources, Schneiderman and Jecker argue that physicians must treat only persons, not bodies.

Second, Schneiderman and Jecker offer another qualitative definition. They argue that treatment is inappropriate when it can only sustain the patient in the intensive care unit or acute care hospital setting. Because these patients are totally dependent upon medical technology, they are “preoccupied” with their illness. Like permanent unconsciousness, this preoccupation precludes meaningful participation in the human community and, therefore, the possibility of treatment conferring a benefit.

Third, Schneiderman and Jecker offer a quantitative definition. They argue that a treatment should not be offered when it has not worked in the last 100 cases. In fact, the authors concede that they are not wholly committed to this specific numerical threshold. Rather, they are committed to the proposition that “the line must be drawn somewhere.”

That last phrase brings to mind the Oscar Wilde quote: “Morality is like art, you have to draw the line somewhere.”

And the phrase “biological bodies” is remindful of Atul Gawande’s insightful writing about the  “warehoused oblivion” of the contemporary ICU.

Schneiderman and Jecker can only help the CEC further its understanding, and maybe as a result have something useful to say. In reading Pope’s description of the qualitative definition in “Wrong Medicine,” it’s impressive how well it holds up even in the light of recent indications of  misdiagnosis of vegetative state.

Va. Moves to Improve Advance Directive Access

From American Medical News:

Virginia has become the latest state to launch an online registry for advance directives that eventually will be connected to a statewide health information exchange.

By connecting the advance directive to an information exchange, a physician could access it without having to contact family or caregivers, or find out a patient's login and password to current online registry programs. That connection would allow a physician to follow through on the patient's wishes without any obligation to contact anyone.

When physicians will have that access depends on when each state has its information exchange up and running.

Read more.

Gingrich: Fed Funds for EOL Chats?

Molly A.K. Connors of the Concord Monitor, reporting on a Newt Gingrich presidential campaign event, heard the director of palliative care at Dartmouth-Hitchcock health care system press the candidate on “death panels.”

Connors wrote:

Gingrich has praised the end-of-life consultations between his wife's family and doctors at Gundersen-Lutheran Health Center in Wisconsin when his father-in-law died in 2006. But (Dr. Ira) Byock was also under the impression that Gingrich had agreed with Sarah Palin's characterizations of such consultations as "death panels."

"Please tell me that you don't believe that those conversations and advanced care planning in some way represents coercion or death panels," Byock said.

Gingrich said he believes government recommendations based on statistics - such as recommendations that certain prostate cancer screenings be completely bypassed - could jeopardize doctors' abilities to provide individualized care for patients.

"I am willing, happily, to support that and suggest that that should be something supported by Medicare," Gingrich said of advanced care planning, "if it's done in a totally decentralized way, with no bureaucracy in Washington defining the terms."

14% Reporting of Patient Harm Events

Those of us on the Community Ethics Committee are currently spending our days and nights struggling with the whole issue of Physician-Assisted Suicide (aka Death with Dignity or Aid in Dying). Perhaps that is why I was struck today by a news "blurb" about the reporting of patient harm stating "only an estimated 14% of patient harm events experienced by Medicare beneficiaries" were reported (from the OIG report summary). That means 86% of patient harm events were NOT reported!! Really!?!

"Hospitals investigated those reported events that they considered most likely to lead to quality and safety improvements and made few policy or practice changes as a result of reported events. Hospital administrators classified the remaining events (86 percent) as either events that staff did not perceive as reportable (61 percent) or as events that staff commonly report but did not report in this case (25 percent)."

http://oig.hhs.gov/oei/reports/oei-06-09-00091.asp

Two thoughts - "Medicare beneficiaries" are more often than not those who are elderly or disabled and arguably less likely to advocate strongly for themselves; and, no matter how you define your terms and how generously you perceive this reporting "glitch", the fact that, of the total incidents of patient harm, only 14% were reported is extremely troubling.

Given the understandable rationale that aiding someone who wants to end their suffering is an act of supreme compassion, I can't help but wonder how many incidents of "oops! we didn't perceive harm" might occur in the area of Physician-Assisted Suicide. I know heaps and gobs of regulatory protective criteria are proposed, but . . . Protective criteria are already in place within our long-established Medicare system and even so, 86% of incidents of patient harm didn't see the light of day. Makes me a little bit afraid of the dark . . .

News & Views into Assisted Dying

Notes, quotes and insights compiled while reading online about efforts to legalize physician-assisted suicide in the United Kingdom, and trying to understand why, under the Death With Dignity law headed for the ballot in Massachusetts, “The death certificate would list the underlying terminal disease as the cause of death.” The official cause of death wouldn’t be the fatal dose? I find that perplexing.

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There’s a blog in the UK named for the former Archbishop of Canterbury, Thomas Cranmer, who argued for Henry VIII’s divorce from Catherine of Aragon, a 16th century lobbying failure that left all sorts of wreckage at the intersection of church and state.

Cranmer died a martyr to the cause but has been resurrected at archbishop-cranmer.blogspot.com with witty, conservative commentary devoted to “examining religio-political agendas with politico-religious objectives” by a writer who goes by His Grace.

The blog is blunt, well-written, and no fan of the Commission on Assisted Dying: “you hand-pick a dozen people who think as you think on a matter, and then publish their findings as reasoned and independent intelligence.”

And, “It is hard to see how the requirement for two doctors to certify a person’s mental capacity will offer adequate protection against the feeling of being a burden on one’s family, especially when unscrupulous members of that family have a financial interest in the death.”

Or, “Where ‘assisted suicide’ is impossible for some disabled (simply because they are physically incapable of ‘pressing a button’), we will, as sure as night follows day, see the incremental introduction of state-sanctioned euthanasia, in order that a third party may legally kill the terminally ill or disabled. And from there, why not terminate those who are mentally disabled and incapable of assessing their own ‘quality of life’? Why should autonomy trump compassion?”

Perhaps the best aspect of the Cranmer blog is the dialogue on morality and end of life that it inspired, with perspectives bolstered by quotations from the likes of Buddha (“This Noble truth of suffering is to be understood.”), Flaubert (““The future is the worst thing about the present”), hospice pioneer Dame Cicely Saunders ("You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die"), and Chesterton ("In my own country, some are proposing what is called Euthanasia; at present only a proposal for killing those who are a nuisance to themselves; but soon to be applied progressively to those who are a nuisance to other people".)

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The Nursing Times reported on an effort by the Nursing and Midwifery Council to clarify with its members that, while the Commission on Assisted Dying is recommending a change in the law, assisted suicide remains illegal throughout the United Kingdom. The story inspired this anonymous comment: “Thank you NMC for reminding us that we are still not allowed to kill patients.”

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Both in the UK and Massachusetts, proposed laws allowing assisted suicide are kept quite narrow -- in particular, they are reserved for the terminally ill. But the exclusionary aspect of this carries unfortunate consequences, which perhaps provides insight into the subsequent pressure to broaden such a narrow law.

The Mirror tells the compelling story of Tony Nicklinson, a mentally competent man left paralyzed with “locked-in syndrome” after a stroke. He is not terminal. He does not now want to die. But he wants the option, and these new recommendations do not include him. 

Other strong essays in reaction to the Commission on Assisted Dying report, both pro and con, can be found here and here.

"The Right to Be Cared For"

The UK report from the Commission on Assisted Dying is out today and available for download.

I haven’t read the report yet, but found this commentary, putting the movement behind assisted dying into context of the larger social need to assist the vulnerable, to be particularly insightful. It’s from David Praill, chief executive of Help the Hospices:

"As the UK charity for hospice care, Help the Hospices wants to see a wider debate on assisted dying and we are pleased that the Commission has recognised the need for hospice and palliative care to be part of this debate.

"Assisted dying is one part of a wider issue that as a society we urgently need to tackle; how we care for vulnerable people – the dying, the frail and the sick.

"For hospices, the issue of assisted dying is not about the right to live or die. It is about the right to be cared for – the right to more care, better care and more appropriate care.

"Hospices play a vital role in supporting people at the end of life, caring for more than 360,000 people each year, including terminally ill people and their friends and families.

"As defined by the World Health Organization, hospice and palliative care ‘intends neither to hasten nor postpone death’ and this philosophy remains a cornerstone of hospice care in the UK.

"Instead, hospice care seeks to improve people’s quality of life before they die by providing care that is personal and tailored to the needs of the individual and their friends and family.

"Through hospice care, people’s fears are addressed and they are helped to live comfortably and with dignity. The power of hospice care to improve people’s experience of living with a terminal illness should not be underestimated.

"It is vital that people facing terminal and life-limiting illnesses are aware of and able to access the tailored care and support that hospices provide to people with a wide range of needs, conditions and ages.

"Hospice care is available to people in a variety of settings – at home, in care homes and outpatient clinics as well as hospice inpatient wards. However, there are still too many people who could benefit from such care but are not receiving it. It is estimated that there are 92,000 people with unmet palliative care needs each year (Palliative Care Funding Review, 2011) – some of which could be met by hospices.

"If hospices are to continue to develop and improve their services so that everyone with a life-limiting or terminal illness has access to dignified, personal and appropriate care at the end of life, it is vital that the role and contribution of hospices is supported. Help the Hospices is working with its member hospices to help achieve that wherever possible."


The BBC's take

When Nurses Are Asked to Hasten Death

With debate building in Massachusetts over Dignity 2012, the ballot effort to legalize assisted suicide, I’m increasingly interested in how the movement to endorse medical assistance in hastening death is playing out elsewhere.

Twitter yesterday drew my attention to a commentary, “The Royal College of Nursing guidance on responding to a request to hasten death,” in the December 2011 edition of the International Journal of Palliative Nursing.

In Summer 2009, the Royal College of Nursing in the UK adopted a neutral position on assisted suicide, which is illegal in the UK. All things considered, it was a bold move, as a few months later the UK Director of Public Prosecutions stated that likelihood of prosecution for assisted suicide increases for health care professionals. 

This past fall, the RCN published related guidelines for when a patient asks for assistance in hastening death, and now nurse Sarah Riches has written an insightful critique of the guidelines.

In most literature I’ve seen related to the end-of-life conversation, the nurse’s role is misleadingly marginalized and any “important” conversation is between doctor and patient. In the 2010 PBS Frontline documentary “Facing Death,” the nursing role was negligible. But while this might be a reflection of literature and media, it’s hardly a reflection of the reality of care.

As Riches and the RCN guidelines both note, nurses and nursing assistants spend the most time with patients, and the most time in conversation with them. Compared with physicians, the nurse-patient relationship suffers less from of a power imbalance, and an empowered patient seems more likely to state true wishes. So communicating about end-of-life issues can be as important as any other nursing skill.

In her commentary, Riches, the nursing director at St. Giles Hospice in Whittington, England, cites strong public support for the right of terminal patient to choose assisted death, and a preference for euthanasia over PAS. And yet, as the RCN guidelines note prominently, euthanasia and assisted suicide are illegal throughout the UK (which is how UK doctors want them to stay: http://pmj.sagepub.com/content/26/1/23.abstract.)

Riches faults the RCN guidelines for focusing on assisted dying rather than placing that conversation within the crucial and broader discussion of end-of-life issues -- where the need for communication skills is great. 

Within that criticism can be found, perhaps, the root of a significant problem in specialized care in the US -- where discussing dying with patients is something of a dying art. Surgeons don’t like to discuss end of life care, according to the Annals of Surgery; oncologists also tend to stress the positive. Meanwhile, reimbursement for end-of-life conversations is somehow controversial, and palliative care (the specialty known for its communication skills) is often a last resort.

With the MOLST advance directive and assisted suicide the subjects of broad public debate in Massachusetts, UK nurse Riches’ point is a timely one: Terminal patients deserve a more skilled discussion of end of life issues, with how to address assisted suicide just one aspect of it. 

The RCN guidelines are a useful resource for a difficult conversation: 

http://www.rcn.org.uk/newsevents/news/article/uk/rcn_launches_guidance_on_assisted_suicide

Riches’ commentary:

http://bit.ly/rG9DyN

Euthanasia: The Terminal Cancer Patient's View

Interesting conclusion from a Swedish study of dying cancer patients’ opinions regarding euthanasia: “Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.”

http://pmj.sagepub.com/content/26/1/34.abstract