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Sick Enough

Jennifer L. Gaudiani

Extracts from Chapter 22, page 257

Older Patients Who Decline Treatment

Let’s turn to the patient population that is older, has been sick a long time, has not experienced relief of psychiatric symptoms despite recently completing highly expert eating disorder programming and taking medications, feels that they will not benefit from a return to a higher level of care despite progressive illness, and no longer wishes to pursue full recovery. Expert clinical consensus holds that forcing such patients into treatment against their will proves futile.

It is unlikely that repeated exposures to the treatment that failed to work in the recent past will suddenly bring about a different result. Life may be prolonged briefly, during enforced treatment, but this specific population of patients relapses rapidly after the enforcement period is over. In addition, these patients often suffer greatly in the process of mandated treatment. I want to make clear that any patient who does wish to pursue full recovery, no matter what their age, how long they have been ill, or how sick they are in the present moment, should be supported and encouraged to do so.

A body of literature addresses patients with severe and enduring eating disorders (SEED), or more specifically severe and enduring anorexia nervosa (SE-­AN). Definitions vary, but SE-­AN generally refers to patients with seven or more years of consecutive illness. This diverse group of patients ranges in age from 20–62, usually characterized by duration of their illness. In a recent study on adults with SE-­AN, younger age, shorter duration of illness, and better social adjustment predicted improved outcomes.

As many as a fifth of patients diagnosed with anorexia nervosa will go on to live with SE-­AN, neither fully recovered nor fully in their disorder. Given the breadth of patients who meet criteria, we cannot use the broad definition of SE-AN to guide decisions of mandated treatment or palliative care.

Harm Reduction

In patients older than 30 who have recently completed gold standard of care but relapse and decline to return to a higher level of care, the outpatient team might proceed with offering a harm reduction strategy. This means setting treatment goals below those for full recovery, for instance a reduced weight goal. These goals ideally are more palatable and less overwhelming to the patient, while still allowing a quality of life that is acceptable. It’s harder to achieve harm reduction in purging behaviors because it’s nearly impossible to gauge how much vomiting or laxative abuse might be safe as far as electrolyte levels are concerned. What is “safe” one week might cause dangerously low potassium the next week.

If a patient can sustain a harm reduction strategy, they can keep working with their team productively. There always remains the chance that a very slow pace of recovery work will earn trust and improve eating disorder symptomatology such that the patient accepts a more complete recovery over time.

Palliative Care and Hospice: Defining Terms

For some patients, a harm reduction strategy does not work. There is no “sub-­basement” level of illness at which the eating disorder is satisfied.

Many people think that palliative care and hospice care are one and the same or that both equate to “giving up.” This is incorrect. Palliative care is its own medical specialty, dedicated to easing physical and emotional symptoms and avoiding aggressive treatments that are unlikely to improve a person’s outcome. Quality of life and symptom management are key.

People may receive palliative care alongside ongoing active treatment—be that for their cancer, emphysema, or eating disorder—for a long period of time. In fact, palliative care has been shown to prolong life in patients with cancer, compared with those receiving medical care alone.

Not surprisingly, attending to the whole person’s wellbeing—psychological, spiritual, and physical—yields better outcomes than focusing on medical issues alone.

Hospice care is provided at the end of life, typically in the last few weeks to months, aiming to ameliorate symptoms while fostering comfort and dignity. No measures are ever taken to hasten the dying process. However, hospice care also helps avoid treatments that would prolong the process, like intravenous fluids in someone who is comatose.

Palliative Care in Severe Persistent Mental Illness

Severe persistent mental illness (SPMI) describes psychiatric illnesses that have multiple comorbidities, chronic courses, frequent relapses, and higher than average death rates. The Swiss Academy of Medical Sciences guidelines on SPMI notes that a palliative approach aims to ameliorate symptoms and disability, improve quality of life, and reduce suicide rates. It can be offered in conjunction with active treatment. They specifically name three diseases that may benefit: therapy-­ refractory depression, severe schizophrenia, and severe anorexia nervosa.

Palliative psychiatry is its own specialty that provides support in coping with and accepting distressing mental symptoms. It affirms life but acknowledges that SPMI may be incurable. A team approach integrates the physical psychological, social, and spiritual aspects of patient care, offering a support system for patients and families.

There is no magical number that qualifies a person for palliative care, no number of times hospitalized, age, years with the disorder, medications tried, nor expected prognosis. Ultimately, it’s the whole story of each patient that helps guide clinicians. Palliative care in anorexia nervosa might specifically involve ongoing supportive therapy and medical care to mitigate physical and psychological symptoms. The team agrees not to mandate a higher level of care against the patient’s will. They might help family members move from policing and strategizing roles into accepting and supporting roles, spending as much good time together as possible.

Hospice

Palliative care efforts can go on for years. If and when a patient becomes sufficiently nutritionally compromised that they are unable to care for themselves independently, a move toward hospice services can be made. In my experience with patients, it can be very hard to predict when someone will die from an eating disorder. As we have seen, humans are remarkably resilient to starvation. Medical equipment can be brought into the home, if desired, and assistance with skin care, activities of daily living, and symptom management can be offered by professionals, along with ongoing family support.

Caring for Patients Who Decline Treatment

No patient with this stage of an eating disorder should be asked, “So you want to die?” However, this question remains all too common. Imagine a woman with Stage 4 breast cancer who has tried all the available treatments, whose cancer has tragically returned. The cancer is now causing intolerable symptoms. The experimental treatments available have no guarantee of success and may make symptoms even worse. Additionally, engaging in further treatment would keep the patient out of her home and away from her family. When such a patient, after extensive conversations with her medical team and loved ones, elects not to pursue further experimental treatments, but rather to live out her days at home, absolutely no one would shame and demean her by demanding, “Oh, so you want to die?”

The fact that nearly all my chronically ill older patients who decline further treatment have had this question asked of them shows the inherent biases still held by doctors and society at large about eating disorders and mental illness. Doctors have been trained that mental illness isn’t a choice. Yet in that frustrated question, they reveal that they too, deep down, believe that the solution is to “just eat.” Collectively, we must recognize that suffering of the mind, in ways we cannot measure, might be just as real and painful as that of the physical body.

One branch of medical ethics literature declines to accept the concept of futility in anorexia nervosa. My answer to that is that I have worked with, truly gotten to know, and deeply cared about some of the most chronically ill and medically compromised patients in the United States. These are people whose suffering is so immense due to their eating disorder and psychiatric comorbidities, without relief from standard and even experimental treatments, that it is clearly inhumane to require them to suffer further. This topic isn’t theoretical to my patients; it’s real, personal, and urgent.

One large study of patient outcomes concluded that patients should not be offered palliative care. This Massachusetts General Hospital study started in 1987 and tracked eating disorder patients who had been admitted with anorexia or bulimia. They assessed patients at nine and then 20–25 years after discharge. At the 9-year follow-­up, 31 percent of patients with anorexia and 68 percent of patients with bulimia had recovered. At the 22-year follow-­up, 63 percent of patients with anorexia and 68 percent of those with bulimia had recovered. The authors pointed out that half of those with anorexia who had not recovered by nine years had achieved recovery at 22 years.

My response is that this leaves 36 percent of patients with anorexia nervosa who had not recovered after 22 years of trying! Some of those might still be seeking active, full recovery, which is wonderful and should be fully supported. But for those who are suffering deeply, and whose families are anguished, trying to figure out what next, they deserve to have a voice in electing less aggressive care should they desire.

Linked from 22/12/2024 Journal