Skip to main content

A Thin Reed to Hang On

Green Heron on Reed (Wild Bird)
It’s no news to most GeriPal readers that a cadre of anti-choice forces targets end-of-life care. In their sights are common end-of-life decisions and palliative support for those decisions. They are hostile to people who, at the end of a long decline or stuck in a prolonged dying process, intentionally advance the time of death and exercise their right to stop life-prolonging technology or treatment. The operative tactic is to tie the hands of doctors attending those patients, when palliative treatment might ease the patient’s chosen death.

As Dr. Timothy Quill recently pointed out in the Journal of Law, Medicine and Ethics, “Widespread agreement exists in the United States about a patient’s right to forego any life-sustaining therapy, even if his wish is to achieve an earlier death.” Treatments can be stopped, and should be stopped as humanely as possible, even if the patient expresses a wish to die in so doing.

Yet current understanding of the law and practice in most states relies heavily on the Roman Catholic Doctrine of double effect, in which physicians are not allowed to share or participate in a patient’s intention to cause death.  Strict adherence to this doctrine stifles honest patient-physician communication, gagging patients who would express a wish to end their prolonged suffering by advancing death. If patients do speak of a wish to die, providers beat a hasty retreat from the bedside for fear of being labeled an accomplice.

Recently published research reveals that onlookers and watchful colleagues already threaten palliative care physicians with accusations of murder and euthanasia. Over half of palliative physicians report they have endured such accusations at least once, some as often as six times, over the past five years. No physician was found guilty of such charges. But the inquiries subjected them to worry, monetary loss, damage to reputation and career, medical license suspension and even dislocation.

Treatments most vulnerable to accusation were use of medication in the process of discontinuing mechanical ventilation and use of opiates for symptom management. When accusations led to serious investigations, the accusers were most likely members of the health care team.

The researchers did not ask the question that hangs heavy over their findings: “Has the palliative treatment you give patients changed since enduring an investigation?” It seems likely even a baseless investigation could increase the end-of-life suffering of an accused doctor’s patients for decades.

Empowering these watchdogs is an anti-choice tactic. Several years ago National Right to Life drafted a bill called, ‘Starvation and Dehydration of Persons with Disabilities Prevention Act” and introduced it in dozens of states. Building on the Terri Schiavo episode, the bills prohibited withdrawal of artificial food and hydration from those in permanent vegetative states unless the person had specified a wish to the contrary in writing.

Those bills encouraged whistleblowing by a host of onlookers, and gave them standing in court to challenge the health care decision. In addition to remote family members, the bills authorized any current or former health care provider (nurses, dentists, pharmacists, etc.) to initiate legal proceedings and get court-ordered tube feeding. It raised the specter of relative strangers posted as lookouts and running to court if a family tried to let their loved one die without a written advance directive.  These bills mostly died in legislative committees across the nation, but language deputizing people remote from the primary family still appears in anti-choice bills.

Barbara Coombs Lee
The state of Georgia recently passed a bill that facilitates accusations of improper care by legislating a specific state of mind when providing end-of-life treatment. In a post to follow, I will discuss in detail how Georgia’s law endangers the best practice of palliative care.

To the degree that the palliative care community favors the physician’s beneficence over the patient’s autonomy in the framework for ethical practice and demands strict obedience to the rule of double effect, it facilitates the anti-choice agenda. Permissible “intention” is a thin reed on which to hang the distinction between felony and state-of-the-art palliative care. When the double effect doctrine becomes codified in statute, it subverts legitimate patient decision-making and leaves healthcare providers vulnerable to accusations of forbidden (i.e. criminal) intentions.

Billings and Churchill recently deplored exclusive reliance on the doctrine of double effect and argued for greater moral pluralism in approaching end-of-life decisions. I agree with their assessment that, “The dearth of attention to other ethical constructs represents a poverty in moral deliberation.” That state of poverty also puts palliative care practitioners at risk for accusation and prosecution.

It would be safer and more patient-centered to define legal medical practice by the patient’s clear and documented wishes and decisions, and best medical practices in support of them.

This is an invited guest post by Barbara Coombs Lee, president of Compassion and Choices.   


Lisa said…
Thanks for the post and taking me to! Job Responsibilities

Popular posts from this blog

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Length of Stay in Nursing Homes at the End of Life

One out of every four of us will die while residing in a nursing home. For most of us, that stay in a nursing home will be brief, although this may depend upon social and demographic variables like our gender, net worth, and marital status. These are the conclusions of an important new study published in JAGS by Kelly and colleagues (many of whom are geripal contributors, including Alex Smith and Ken Covinsky).

The study authors used data from the Health and Retirement Study (HRS) to describe the lengths of stay of older adults who resided in nursing homes at the end of life. What they found was that out of the 8,433 study participants who died between 1992 and 2006, 27.3% of resided in a nursing home prior to their death. Most of these patients (70%) actually died in the nursing home without being transferred to another setting like a hospital.

 The length of stay data were striking:

the median length of stay in a nursing home before death was 5 months the average length of stay was l…

Opening the Black Box of LTACs: Podcast with Anil Makam

What happens in Long Term Acute Care Hospitals, or LTACs (pronounced L-tacs)?  I've never been in one.  I've sent patients to them - usually patients with long ICU stays, chronically critically ill, with a gastric feeding tube and a trach for ventilator support.  For those patients, the goals (usually as articulated by the family) are based on a hope for recovery of function and a return home.

And yet we learn some surprising things from Anil Makam, Assistant Professor of Medicine at UCSF.  In his JAGS study of about 14,000 patients admitted to LTACHs, the average patient spent two thirds of his or her remaining life in an institutional settings (including hospitals, LTACs and skilled nursing facilities).  One third died in an LTAC, never returning home.

So you would think with this population of older people with serious illness and a shorter prognosis than many cancers, we would have robust geriatrics and palliative care in LTACs?  Right? Wrong.

3% were seen by a geriatrici…