Skip to main content

A Call for Maternalism in Medicine



by: Laura Petrillo @lpetrillz

After a recent family meeting, I received a piece of feedback from a social worker that took me by surprise:  "You were very maternalistic in there, but it worked," she said.

I reflected on the conversation we just stepped away from.  Our palliative care inpatient consult team had been asked to talk with the family of a patient who had been in the intensive care unit for weeks.  Mr. B* had severe vascular disease and a systemic infection that had caused his organs to shut down, and he was now being kept alive by a ventilator, vasopressors, dialysis, transfusions and artificial nutrition.  His legs had turned purple and cold the day before, so the surgeons had amputated both of them in an attempt to save his life.  Now the purple was beginning to creep up his abdomen, and the surgeons did not have any more procedures to offer.

We met the patient's surrogate decision maker, a young woman named Devon. She was working and in school through Mr. B's illness, and was exhausted and overwhelmed.  She told us that Mr. B owned a sailboat that he loved, and that he was independent and stubborn, still smoking up until he was admitted to the hospital, despite his atherosclerosis.  She told us that he was a fighter, and she hoped he was going to make a full recovery.  However, she realized his condition was very serious, and she said that if he were not going to ever get better, she did not want him to suffer. 

We listened.  And examined the patient.  And talked to the surgeons, who were also struggling-- they did not feel good about continuing aggressive measures since Mr. B's chance of recovery was getting slimmer by the day.  They worried he was suffering and that they were doing him harm, but they did not know how or when to stop, since every time they asked, Devon opted to keep doing "everything."

The surgeons brought us all together as a group to talk, the family and the medical teams.  We offered Devon our support, and acknowledged her hope that Mr. B would get better.  We gauged her understanding of his critical condition, and provided an update on the dearth of options.  We gently told her how sorry we were that Mr. B was dying.  We echoed her goal that he not suffer, and recommended that we shift our focus to measures to make him comfortable.  We did not provide a menu of options, but rather one course of action that reflected the patient and family's goals, the patient's condition, and a realistic assessment of what our medical interventions could achieve in his situation.

When the social worker told me I was "maternalistic" after the meeting, I initially chafed. I had been trained to scorn paternalism, the old school attitude in medicine that "doctor knows best," and that patients don't get a voice.  Over the past few decades, there has been a pendulum swing in American medicine toward patient autonomy, the idea that patients have a right to choose what happens to their bodies.  Ironically, the first instances of this were patients who did not want the resuscitation that their physicians were bent on providing, and wanted the right to die naturally or at least not be sustained on life support that prolonged death rather than extended life. Now, it seems the challenge is much more often that extraordinary measures are routine practice and patients have come to expect them, and physicians continue to offer "everything" until the patients, or their families on their behalf, decide when to stop. 

I thought that the social worker was gender-izing the concept of paternalism to be politically correct because I'm a woman, the way you would say "mailwoman" or "congressperson," and casting me in the paternalist lineage. But the more that I thought about it, the more I wondered whether maternalism might be something different and new, and in fact might be just what is needed sometimes-- a place for the pendulum to rest when all options are not equal, and physicians want to communicate a recommendation while also taking the values of the patient and family into account.

To be maternal is to listen, support, protect, guide.  Sometimes it can be just too hard for families to say "enough."  They fear feeling like they gave up, or brought about their loved one's death, even though it was the illness that robbed them.  A maternalistic doctor might relieve that burden, by recommending a specific course of action rather than providing options and staying on the sidelines, agnostic.  But a maternalistic doctor can only make recommendations because she has first listened, and gotten to know the goals and values of her patient, and then added to those to her medical knowledge and experience, much as Sulmasy recommends in his "substituted interests" model of surrogate decision making.  Of course, male physicians could be maternalistic too.  We rejected the paternalistic doctors of yore not because of their gender, but because they left patient input out of their decisions.

The transition to comfort-focused care went smoothly for Mr. B, and he died a few hours later, his loved ones holding his hands, and a nicotine patch on his arm.  When Devon hugged me and thanked us for caring for him until the end, I decided to take the maternalism comment as a compliment. 

* potentially identifying details have been altered to protect patient confidentiality

Comments

I think there is a role for maternalism in end of life care. In fact, I like the term. It is less threatening than paternalism and more in line with what I think we do. Patients and families often do not understand complex issues. Autonomy can only be respected when a concerted effort has been made to tease out all the issues and explain the consequences different decisions(1). I also agree with others who say we have an obligation to respect Autonomy but that Beneficence and Non Maleficence impose on us a greater duty: To do the right thing(2).
I consider myself a maternalistic doctor. I think there is much about the practice of Palliative and Hospice medicine that requires a less aggressive, more nurturing, approach.
1.- Billings AJ, Krakauer EL. On Patient Autonomy and Physician Responsibility in End-of-Life care; Arch Intern Med. may 2011; 171(9): 849-53
2.- Lantos J, Matlock AM, Wendler D. Clinician Integrity and Limits to Patient Autonomy; JAMA. February 2011; 305(5): 495-99
Rea Ginsberg said…
Well said, thoughtful, beautifully reframed!! Turns an irksome comment into a source of pride and good will...ethically apt!

Popular posts from this blog

Geroscience and it's Impact on the Human Healthspan: A podcast with John Newman

Ok, I'll admit it. When I hear the phrase "the biology of aging" I'm mentally preparing myself to only understand about 5% of what the presenter is going to talk about (that's on a good day).  While I have words like telomeres, sirtuins, or senolytics memorized for the boards, I've never been able to see how this applies to my clinical practice as it always feels so theoretical.  Well, today that changed for me thanks to our podcast interview with John Newman, a "geroscientist" and geriatrician here at UCSF and at the Buck Institute for Research on Aging.

In this podcast, John breaks down what geroscience is and how it impacts how we think about many age-related conditions and diseases. For example, rather than thinking about multimorbidity as the random collection of multiple different clinical problems, we can see it as an expression of the fundamental mechanisms of aging. This means, that rather than treating individuals diseases, targeting …

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…