When Legislators Do Harm

Has Idaho just become the worst place in the country to be an ICU nurse?

Both of Idaho’s legislative bodies have now approved a measure that supporters say is necessary to assure respect for dying patients. Once signed by the governor, doctors and nurses in the state will be strictly limited, in the words of the Idaho Statesman, “on when they can withhold care to dying patients without the patient's consent.”

Sounds reasonable -- so long as you accept that what the medical team intends to do is “withhold care.” But is “care” being withheld, or is the treatment insisted upon by the patient’s family (because the patient is sadly beyond communicating more than an occasional wince or agonized sigh) of no therapeutic value to a dying patient?

Has the care in question become futile at best, harmful at worst? And who, in all of this, is actually looking out for the patient’s best interests?

When dying is in process, it’s hard enough on all concerned -- family, patient, care team -- that there are no more therapeutic options. But for Idaho to create a situation that devalues medical judgement, and forces provision of futile care, is to turn non-maleficence on its head: the state is essentially insisting that the doctors and nurses do harm. 

It’s essential to good medical practice that the benefit to the patient outweighs any potential harm. To be ordered to deliver harm without benefit leaves the ICU nurse with a choice: either refuse to provide treatment that goes against your patient’s best interests, and leave it to a colleague; or suck it up and try not to think about what the patient is feeling.

One vote against the bill came from House Minority Leader John Rusche, who was concerned at the impact on medical staff making difficult decisions about dying patients. Rusche is also a physician.

Swiss Trends in Assisted Suicide

In a recent blog, Kathy Kaditz suggested we look to models outside of the U.S. that have death with dignity/physician assisted suicide laws. Here is a summary of Switzerland's most recent experience in Switzerland, which instituted DWD/PAS in 1942.

bites of bioethics, life and death

The Oxford Centre for Neuroethics  (using the UK spelling) posts short discussions on topics related to our ongoing discussion.   Many are thought-provoking.   The talks are available at their website and on iTunes.
http://www.neuroethics.ox.ac.uk/bio-ethics_bites

One in particular (scroll down to Peter Singer) is on topic as we explore the Massachusetts ballot initiative to legalize physician assisted suicide.

PETER SINGER (MP3) - Life and Death

If a patient decides she doesn’t want to live any longer, should she be allowed to die? Should she be allowed to kill herself? If a patient is no person to decide – perhaps she’s in a coma – then should somebody else be able to decide to kill her? Who? Is there a moral difference between killing and allowing someone to die? And is the role of the doctor always to prolong life? Peter Singer, of Princeton University, is one of the world’s leading bio-ethicists, and has been reflecting on life and death issues for four decades.  

Peter Singer first became well-known internationally after the publication of Animal Liberation in 1975. Since then he has written, co-authored, edited or co-edited more than 40 other books, including Practical Ethics; The Expanding Circle; How Are We to Live?, Rethinking Life and Death, The Ethics of What We Eat (with Jim Mason) and most recently, The Life You Can Save. Outside academic life, Peter Singer is a member of the Leadership Council of Oxfam America, a Vice-President of the Royal Society for the Prevention of Cruelty to Animals (UK),and a member of the Advisory Board of GiveWell.net. In 2005 Time magazine named him one of the 100 most influential people in the world.

Occupy Death? Absolutely!!

This is such a good TED lecture - Dr. Peter Saul speaks right to the point of so many of the topics the Community Ethics Committee has wrestled with in our end-of-life discussions.

The medicalization of death; becoming political and taking the vocabulary of the "natural birth" movement from the 1980s and using that same language to talk about a "natural death" in the 2010s; and becoming proactive about taking this discussion away from euthanasia and physician assisted suicide and instead talking about occupying death - having the Conversation and sparing our friends and families the trauma of not talking about what we all know will come.

Ontario’s CCB vs. Texas Advance Directives Act

Prolonging life is a specialty of our time. Knowing when to stop trying -- that, we’re not so good at.

State legislators increasingly are responding to decision-making disputes in end-of-life care. But like the medical decisions inspiring them, the legislation holds great potential for doing harm in an effort to do good.

In Idaho, State Senator Sheryl L. Nuxoll is sponsor of the "Discrimination in Denial of Life-Preserving Treatment Act," which has passed the Senate and awaits House vote. It is, essentially, an anti-futility bill.

In Alaska, State Senator Fred Dyson proposes bolstering a competent patient’s exercise of consent as related to withdrawal of a Do Not Resuscitate Order. “The question is whether current law gives a patient, with capacity, the right to make a DNR order ineffective,” Dyson says. “I maintain it does, and SB 172 seeks to clarify the meaning of existing language in the law."

Meanwhile, among palliative and hospice chat groups on Twitter and other social networks, proponents want more states to adopt something like the Texas Advance Directives Act, or TADA. 

Dr. Robert Truog has written extensively about futile care and Texas law, and recently returned to the subject in the New England Journal of Medicine. The NEJM piece, indeed, inspired a recent flurry of pro-TADA tweets.

Truog writes that TADA “has defined one very concrete approach to addressing these dilemmas. When families demand treatments that have an exceedingly low likelihood of success or that sustain life of such low quality that one might reasonably say it is of no benefit to the patient, Texas law allows physicians to refuse to provide such treatments. Under the Texas legislation, demands by families for treatments that appear to meet these criteria are adjudicated by a hospital-based committee, and if the committee agrees with the clinicians, and if other providers cannot be located who are willing to provide such care, then treatment may be withdrawn without the permission of the patient’s surrogate.”

What TADA does well is resolve intractable disputes in a way the legal system cannot (terminal patients tend to die before their day in court ever arrives). With no dispute resolution, prolonging the dying process for no therapeutic or curative purpose can do harm to the care givers and patient alike.

“Although Texas has the most experience with this approach,” Truog writes, “other states are showing interest in similar proposals that address both the financial implications of providing allegedly inappropriate care and the concerns of clinicians who must endure the moral burdens and burnout associated with being compelled to provide treatments they believe are ethically wrong.”

TADA succeeds by eliminating that eventual day in court, which is something of an exercise in futility itself. TADA keeps the decision within the hospital, with an internal board deciding. But even if all cases are decided reasonably and well, with the patient’s best interests upheld, the big loser in the TADA scenario is due process, the constitutional protection of individual rights with a guaranteed day in court. As a result, with TADA, efficient resolution comes at the potential expense of public buy-in and trust.

Perhaps these cases of intractable dispute are so extreme, and so relatively few, that an end run around due process is acceptable. But if due process is worth upholding in all possible cases, is there an alternative way to ensure expedience, fairness and the patient’s best interests?

I think the answer is yes -- but the model is found, not in Texas, but in Ontario, Canada. Under the Health Care Consent Act, established in the 1990s, Ontario has created responsive appellate panel known as the Consent and Capacity Board, or CCB. It consists of lawyers, psychiatrists and members of the general public appointed by the lieutenant governor. It considers cases concerning mental health, consent, privacy, and substitute decisions.

In resolving intractable disputes, the CCB has an impressive record of looking out for the patient’s best interest. In one recent case, the CCB sympathized with the view that a patient’s care had become futile, and yet ruled for the patient’s family -- because the physicians hadn’t bothered to determine or consider the patient’s religious beliefs, and how the values might influence care decisions. In essence, the physicians sought to make decisions without really knowing the patient, and the CCB called them on it. In this case, the CCB passed the “best interests” test with flying colors.

The ethicist Peter Singer has written of medical futility: “There is no consensus about these cases, and they are horribly complicated. They require striking a balance between the desires of families and the moral distress of health care teams.”

The courts can’t do this with the timeliness required, and no matter how well structured, a Texas-style internal hospital board can carry the taint of power imbalance.

Disputes over futility have been a recurring theme of CEC studies, especially in Withholding Non-therapeutic CPR. As my colleague Carol Powers reminded me, “The CEC's report really focused on balancing the patient's rightful authority to establish his or her own ‘overall goals of care,’ based upon the patient's values and cultural biases, with the physician's rightful authority to determine which medical treatments will or won't accomplish those goals of care.”

Law professor Hilary Young of Ontario’s Queen’s University writes: “There should be a process to ensure that continued life support is, in fact, medically inappropriate, and to inform and counsel (substitute decision-makers) and family members. We must give families a reasonable amount of time to come to terms with the tragedy they face.”

To do otherwise, Young writes, “creates a dilemma for doctors and amounts to an undesirable legal entitlement to health care.”

Both the CCB and TADA deal effectively with the “reasonable amount of time” issue. But the CCB takes the decision outside the hospital, which gives it the benefit of perception. That, I believe, makes it the preferable option.

PAS Opponent's "Flawed Rationale"

In a letter to the editor published in the Boston Globe on March 19, Robert Joyce of Newton responded to a Globe obituary of Dr. Peter Goodwin, who not only championed the Death With Dignity movement, but used that Oregon law to die on his own terms at age 83. 

In his letter, Joyce cited hospitalized patients’ need for an advocate. And on that point, Kathy Kaditz, a member of the Community Ethics Committee, which is responsible for this blog, agrees with him.

But Kaditz takes issue with much of the rest of Joyce’s letter. She writes:

Though his client’s case is not detailed, in my experience hospitals try to honor the “goals of care” as stated by a patient or their proxy. However, hospitals recognize disputes do arise and communication does break down.  Many hospitals are addressing this through the creation of a position called a “ hospitalist” whose job is to work with a patient or their surrogate to determine the patient’s “goals of care,” then to monitor and coordinate implementation of those goals during the patient’s hospital stay.

However, the referendum on the November ballot (called the Death With Dignity Act), allowing a physician to prescribe a lethal dose of medication to a terminally ill patient, is very different from the case Attorney Joyce cites, which he summarizes as a dispute between his client and hospital staff over the staff’s recommendation to withdraw the patient’s dialysis treatment. I believe his rationale is flawed. The Death With Dignity Statute by its expressed terms is completely voluntary. It can only be patient initiated.

The goal of the statute is to expand the choices for terminally ill patients who wish to have the option of controlling the time and manner of their death. The statute’s protections are limited to people who request a lethal prescription, are diagnosed to be within six months of dying and are determined to be mentally competent by their physician or a mental health professional. They must be able to voluntarily take the medication without assistance. The Death With Dignity Statute allows a person who meets these criteria to request a lethal prescription from their physician – a prescription which  the patient may or may not choose to fill or to use. Research in Oregon, which has a similar statute, has indicated that many terminally ill patients, after obtaining a prescription, feel a sense of control that reduces their suffering to the point they elect not to use it. It should be noted that the statute, by definition, excludes people with Alzheimer’s disease or ALS. There is room to debate whether the statute is too broad or too restrictive.

Finally, the vast majority of people express a wish to die at home.  In Oregon and Washington, where the Death With Dignity Statute is enacted, people choose to die at home. Physician involvement does not go beyond writing the prescription. I recommend Attorney Joyce review the proposed language of the statute before making misleading comparisons. A balanced documentary on this topic, How To Die in Oregon is available online, at no charge.

The Death With Dignity Act is clearly a significant piece of legislation that requires thoughtful deliberation. But let’s not start the conversation before the statute’s provisions are fully reviewed and understood. The misrepresentation of the statute through use of inflammatory examples and/or language inhibits a reasoned debate. This does a disservice to all residents of the Commonwealth, regardless of which side of this issue they stand.

The Community Ethics Committee for the Harvard Teaching Hospitals is currently studying the topic and plans to add to the community's understanding through publishing a report on physician assisted suicide later this spring and will encourage the conversation through this blog,

Kathleen Kaditz

Retired School Administrator

Secretary for Community Voices in Medical Ethics

Member of the Community Ethics Committee

Community Member, Ethics Advisory Committee, Spaulding Rehabilitation Hospital

Care, Choices & Cost

Another example of why Thaddeus Pope’s blog, www.medicalfutility.blogspot.com, is such a great resource. Be sure to read the comments.

In an article defending the  development of clinical practice guideline in a "private regulation regime," University of Texas law professor Ronen Avraham identifies 4 costs associated with overuse:

1. Defensive Medicine - excessive care that physicians provide in an effort to shield themselves from liability

2. Offensive Medicine - excessive care that physicians offer to maximize reimbursements

3. Cost-Apathetic Medicine - excessive care that physicians provide because they are trained to to everything for their patients and not pay close attention to costs

4. Compassionate Medicine -  excessive care that physicians provide, primarily at the end of life, because they cannot bear the thought of doing nothing

Where Should the Doctor Draw the Line?

Last night I joined a colleague in a conversation with medical students about medical futility, the relatively infrequent but damaging dispute between a patient or surrogate decision maker demanding treatment and a physician who believes it holds little or no therapeutic promise. 

This morning I read online a Wall Street Journal piece on the apparently growing practice among pediatricians of firing families that refuse vaccinations.

In the first case, the patient is demanding therapy against the physician’s best judgement. In the latter, the patient is refusing treatment against the physician’s best judgement.

Clearly, “the customer is always right” doesn’t apply to medical practice. But in a system that treasures patient autonomy, when is it appropriate for a physician either to deny an available treatment, or insist on one? When must a physician do so? 

Medical Research in the Rearview Mirror

What medical research being performed today -- and considered acceptable and ethical by contemporary standards -- will not fare so well in the opinion of future generations? 

This is the provocative question posed by the journal Nature in Hypocritical Oaths: History judges some research as unethical, despite approval at the time. 

The Nature essay comes in response to the revelation of tests conducted without consent on more than 5,000 Guatemalans, at least 1,300 of them infected with sexually transmitted diseases, as part of a U.S. Public Health Service research project from 1946-48.

At least 83 people died, and many others were gravely harmed by treatment so obviously barbaric by today’s standards. Victims included prisoners, soldiers, the mentally ill and commercial sex workers. 

Though the Guatemalan research was conducted at roughly the same time as the Nuremberg Trials --  which revealed research atrocities of Nazi Germany -- it did not come to light until 2010, revealed by the Obama administration (NOTE: correction in Comments) with a formal apology to the Central American country. 

The horrid story has led to recommendation of new rules to protect volunteers in human-subject experiments, and the Obama administration has allocated funds to fight sexually transmitted diseases in Guatemala.

In a recent editorial, the Washington Post called the apology from the U.S. government insufficient and recommended that compensation should be paid to victims or their survivors. “It should not take a lawsuit to prompt the government to do the right thing,” the Post editorial said.

The CEC’s report for the Presidential Commission on Bioethical Issues, Advocacy for Research Participants, can be read here. 

Palliative Care Anyone?

Two bits and pieces converge - suggestions to make palliative care primary - when cancer is diagnosed and in place of current hospice programs.

ASCO suggests that in treating some cancers, palliative care should be made available immediately upon diagnosis.

In the same month, former hospice director Hunter Groninger, MD (now at NIH in the Pain and Palliative Care Service) suggests that home-based palliative care may be an alternative approach to the current Medicare-funded limited hospice benefit . He writes:

"A more radical approach might replace the hospice benefit with home-based palliative care, similar to the model studied by Richard Brumley and colleagues and described in the July 2007 Journal of the American Geriatrics Society. Patients with advanced congestive heart failure, cancer, or COPD were given symptom-focused interdisciplinary supportive care at home that was similar to home hospice care, but with important differences. Under the program, patients could participate if their expected life expectancy was less than twelve months, rather than six; they could continue receiving disease-modifying therapies; and the palliative care physician actively coordinated care among all of the doctors involved, to help diminish fragmented care. The results? This home-based palliative care intervention greatly reduced the costs of care, prevented hospitalizations and emergency department visits, and improved patients’ satisfaction."

Our current approach to end-of-life care is stymied by the lack of prognostic certainly -- we just don't know when someone is going to die and we don't provide palliative care services throughout an illness because no one knows if it's really the "last illness" or just one more illness along an excruciating long road to that last illness.

The current suggestions (providing palliative care immediately upon a cancer diagnosis and in place of the time-limited hospice benefit) are progressive, creative, and deserve a closer look

Life & Death: A Perfect Storm in 2012

I recently read about a Seattle hospital's merger into a company that followed the moral teachings of the Roman Catholic church in its policies, most notably with regard to life’s beginning and ending.

Along with Oregon, Washington is one of two states in the country where voters have sanctioned the legalization of physician-assisted suicide for the terminally ill, a sanction that couldn't be honored in a Catholic-run hospital. But can a hospital refuse treatment voters have approved?

A similar hospital merger in Louisville was stopped by Kentucky Governor Steve Beshear in late December over concerns that included restrictions in reproductive services. "In my opinion,” the governor said, “the risks to the public outweigh the potential benefits."

According to USA Today, in Troy, NY, a maternity ward was created, free from Catholic restrictions and separately licensed, on the second floor of a secular hospital taken over by a Catholic system. And to ease concerns about affiliating with a Catholic system, Swedish Medical Center in Seattle agreed to fund a Planned Parenthood office next door. 

“In the past few years, proposed mergers between Catholic and secular hospitals in Louisville, Ky., and Sierra Vista, Ariz., have collapsed in part because of concerns about the church's bans on abortions, in-vitro fertilizations and sterilizations,” USA Today reported recently.

San Francisco-based Catholic Healthcare West, its growth prospects compromised, is ending its Catholic affiliation and changing its name -- to Dignity Health, not to be confused with Dignity 2012, the organization promoting physician-assisted suicide in Massachusetts.

I recalled these scenarios this week as I read about the staunchly Catholic GOP candidate Rick Santorum’s primary night sweep; criticisms by Santorum, House Speaker (and Catholic) John Boehner and others of President Obama’s controversial new contraceptive policy; and the state Supreme Court declaring unconstitutional Georgia’s ban on advertising assisted suicide. (The practice of assisting in suicide isn’t actually illegal in the state, only the advertising of it.)

Throw in California's newly overturned Proposition 8, and the separation of church and state is becoming a perforated line at best, or perhaps a rift.

In the Georgia ruling, the court suggested the state could formally legalize assisted suicide, and perhaps that is what Georgia legislators will do (NOTE: See correction in attached Comments). Meanwhile, in Massachusetts (39 percent Catholic in 2008), the question of legalizing physician-assisted suicide will be put to the voters in November.

Life, death, faith and choice are in for a profound going-over this election year. 

Georgia Court Rules for Suicide Proponents

What comes next, now that the Georgia Supreme Court unanimously has sided with suicide proponents who said their free speech rights were violated by a state law criminalizing assisting in suicide?

Four members of the Final Exit Network will not stand trial on charges that they assisted in the death of a 58-year-old cancer patient. The Supreme Court's ruled that Georgia law violates free speech clauses of the U.S. and state constitutions. 

And yet Georgia doesn’t actually forbid assisted suicide, but since 1994 has banned publicly advertising it, apparently in response to concerns that the state might become known as an assisted-suicide destination. As such, Georgia law seems something of a don’t ask, don’t tell for assisted suicide.

The suicide at issue did not involve a physician’s prescription, but a tank of helium and an “exit hood.” The court said lawmakers could have banned all assisted suicides without restricting speech, or banned offers to assist in suicide that were followed by the act. 

"The State has failed to provide any explanation or evidence as to why public advertisement or offer to assist in an otherwise legal activity is sufficiently problematic to justify an intrusion on protected speech rights," the ruling said.

Physician-assisted suicide, which will be on the ballot in Massachusetts in November, already has voter approval and is practiced in Oregon and Washington, while the Montana Supreme Court has deemed it acceptable medical treatment. In Hawaii, a legislative effort to legalize the practice stalled last year, and the state attorney general recently said a physician assisting in a suicide “could be charged under Hawaii's manslaughter statute." 

Will Georgia lawmakers now specifically address the legality of assisted suicide? And does the Georgia ruling have any ramifications for Massachusetts? 

Read more: http://www.foxnews.com/us/2012/02/06/ga-court-overturns-assisted-suicide-restrictions-1677804893/#ixzz1ldSzck00

Care & Collaboration

I’ve got a bias. Whether I’m trying to understand disputes over medical futility or distinguish palliative sedation for the dying from assisted suicide, I’m drawn to the nurse’s perspective. No one works more closely with the patient’s best interests.

My bias is rooted in heavy reliance on nurses during my daughter’s life-threatening illness. My daughter was cured, I emerged relatively sane, and while physicians accomplished what was impossible in my own childhood, it was nurses who responded at the push of a button, won our confidence and trust, and held our hands on the long walk into the new normal: Brooke, Suzanne, Michael, Phaedra, the other Brooke. It’s a long list.

Now, in trying to comprehend medical futility for a Community Ethics Committee study, it breaks my heart to think of a nurse devoted to a patient’s best interests but trapped delivering harmful care to a dying patient on life support who may feel nothing except the agony of a dressing change on deteriorating skin. I’m unclear on what the CEC might say to help the situation, but I’m glad we’re trying.

I’ve also discovered that it’s much easier to say, “Stop putting off the end-of-life conversation,” than to understand the forces that put it off. That Americans don’t want to acknowledge mortality is part of the problem, as is a physician’s aversion to admitting defeat. but acknowledging the inevitable before the end is near is crucial to good medical care, isn’t it? So bringing palliative specialists into the dialogue long before curative or therapeutic options are spent makes a lot of sense.

After spending days reading and writing about Amanda Trujillo, the Phoenix nurse fired for somehow overstepping bounds in advocating for a dying patient, I’m now studying a transcript of the roundtable discussion “Palliative Care in the ICU”  in the Journal of Palliative Medicine. There’s much useful information in it, especially with regard to a more collaborative approach to medicine that would increase the influence of palliative care from the ER to the ICU.

The roundtable was organized by the IPAL Project, an initiative from the Center to Advance Palliative Care. IPAL stresses the importance of a unified team using ICU palliative care quality indicators and ensuring that the spiritual, emotional and communication needs of patients are addressed.

The roundtable was a remarkable gathering of leading palliative care lights, including Kathleen Puntillo, an RN and Doctor of Nursing Science in the Department of Physiological Nursing at UC San Francisco. She spoke insightfully about the nurse's role and responsibilities in palliative care, and about the cost of marginalizing palliative care to the dying process. 

“We still oftentimes maintain this very narrow focus that sees palliative care only as end-of-life care, and if the patient is not deemed to be at the end of life, then it is not time to call in palliative care services,” Puntillo said. “This narrow focus prevents patients and their families from getting the different types of palliative care that are available.

“I think there are great challenges in ICUs and for ICU patients if we are not at the point where we are saying this patient is imminently dying. We have this tension, if you will, between the patient's physiological instability and the need for symptom management. Indeed, many patients in ICUs suffer from many symptoms such as fatigue, thirst, anxiety, and pain, so they have a need for symptom assessment and management. But again, this need for interventions or thoughts of interventions for symptoms often gets waylaid by the concern that we are going to make patients physiologically unstable.”

A devotion to rescue leaves little space for considering or discussing other scenarios.

“In many surgical ICUs, depending on the specialty, the focus is on rescue.” said critical care surgeon Anne C. Mosenthal of New Jersey Medical School. “There is less willingness to acknowledge some patients may die, and that palliative care is necessary. ”

How, then, to make palliative part of the fabric of care, and not a last resort waiting for the “real” care to be exhausted? 

“Some of the ICU clinicians are very proud and protective of the work they are doing in the ICU and the challenge of having a consultative service come in can be quite difficult,” said licensed clinical social worker Colleen M. Mulkerin of Hartford Hospital. “Trying to support and integrate some of the palliative care concepts and practices into what the critical care teams are doing can be so valuable. With a little bit of support and education, we as palliative care specialists are able to improve the ability of the ICU team to do family meetings, to involve families on rounds, and develop better ways to integrate patients' values and preferences for care.”

A collaborative approach, in other words.

“Effective quality improvement requires an interdisciplinary team effort,” said Dr. J. Randall Curtis of Harborview Medical Center/University of Washington. “The team needs good interdisciplinary communication and collaboration. These teams require multiple disciplines working together as opposed to professions working in silos. Our health care system historically has been very hierarchical in its design, and one of the lessons of these quality improvement efforts is that we need to find ways to empower everybody on the team to address issues and problems that they see arising regardless of their discipline or profession.”

I’ve captured only some of the roundtable highlights here, and not all participants. The full transcript is not to be missed by anyone interested in improving EOL care.

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).