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