Palliative care for patients suffering from severe persistent mental illness

While palliative care grows as an interdisciplinary specialty, more clinicians are asking how it can benefit certain patients with severe mental illness.

Palliative care, which developed with the founding of hospices in the 1960s, initially focused on patients who were dying from cancer. The specialty – which emphasizes improving patients’ quality of life rather than finding a cure, and which is different from hospice – can now be used for patients with noncancer diagnoses such as dementia and HIV/AIDS ( Psychiatry. 2009 Jun;8[6]:212-15) .

Some psychiatrists think that certain patients with another diagnosis would benefit from palliative care: those with severe persistent mental illness.

In fact, this approach might apply to psychiatric patients who are in long-term residential care with “severe/chronic schizophrenia and insufficient quality of life, those with therapy-refractory depressions and repeated suicide attempts, and those with severe long-standing therapy-refractory anorexia nervosa,” wrote Manuel Trachsel, MD, PhD, and his colleagues (BMC Psychiatry ( 2016 Jul 14:1-9 ).

Scott A. Irwin, MD, PhD, who coauthored that article and a letter examining these issues, said Dr. Trachsel’s theories lie on the frontiers of current thinking about incorporating palliative care and psychiatric medicine.

Meanwhile, both Dr. Irwin and Maria I. Lapid, MD, another psychiatrist with expertise in palliative care, said that in many ways, the field of psychiatry is inherently palliative in nature.

Palliative ‘approach’ in SPMI

Dr. Trachsel presented unpublished results from a survey of U.S. psychiatrists at the annual meeting of the American Psychiatric Association in May that sought to discern whether they favored supporting short-term quality of life rather than long-term disease modification in certain patients with severe and persistent mental illness (SPMI) – defined as mental illness that is chronic or recurring, requires ongoing intensive psychiatric treatment, and seriously impairs functioning.

The response to Dr. Trachsel’s survey was poor – 60 U.S. psychiatrists responded out of nearly 1,000 randomly queried. This means the results are likely to be biased and difficult to generalize. However, all of the psychiatrists who responded agreed that improving function in daily life was important for patients with SPMI, and 90% agreed that reducing suffering was important. Nearly two-thirds ranked as important patient autonomy. The results argued for psychiatrists to focus the goals for their most treatment-refractory patients toward patient desires and quality of life. This approach, which emphasizes preventing and relieving suffering, aligns with the World Health Organization’s definition of palliative care , said Dr. Trachsel, who is affiliated with the University of Zürich.

Specifically, a palliative care approach to SPMI could include a more relaxed use of agents considered potentially addictive or problematic long term, such as benzodiazepines, Dr. Trachsel said. For patients with medical decision-making capacity, it could 1) include withdrawal of care at a patient’s insistence or periods of intermittent sedation – which is used in palliative medicine for patients with intractable pain; or 2) mean switching a patient with end-stage anorexia and multiple failed treatment attempts to hospice care rather than force feeding, Dr. Trachsel said.

Neither Dr. Trachsel’s survey respondents nor those who attended his presentation seemed comfortable with the idea of extending the term “palliative care” – which is often and incorrectly associated with well-defined end-of-life scenarios – to serious, treatment-refractory mental illness. In those illnesses, disease trajectories may be less certain and futility is harder to define. They and other clinicians, however, did voice general support for the underlying concepts of promoting quality of life and decision-making autonomy for patients with SPMI, as well as palliative care targeted at the medical illnesses often acquired by those with SPMI.

According to Dr. Irwin and Dr. Lapid, reducing symptoms, acknowledging that there is no cure for SPMI, and focusing on optimizing patients’ quality of life would be core components of palliative care.

Futility difficult to define

Dr. Irwin said in an interview that the ideas in the letter ( Lancet Psychiatry. 2016 Mar;3[3]:200 ) in which he and a few other colleagues collaborated with Dr. Trachsel were essentially “a thought experiment and very philosophical.” In addition, the letter, which proposed palliative psychiatry “as a means to improve quality of care, person-centeredness, and autonomy” for patients with SPMI, was supported by a handful of case studies, most of them in patients with end-stage anorexia, he said. Furthermore, end-of-life interventions are only a subset of what palliative care brings to the table, said Dr. Irwin, palliative care psychiatrist at Cedars-Sinai Health System’s Samuel Oschin Comprehensive Cancer Center in Los Angeles.

With a psychiatric illness, the goals are usually around symptom management and quality of life, and for certain palliative care interventions reserved for end-of-life situations, “there’s usually not something knocking at the door that’s putting that end-of-life question into focus,” Dr. Irwin said. To create end-of-life protocols for SPMI, “you would need to know what the prognosis and trajectory are of each stage of these illnesses. And we don’t have good evidence guiding us.

“If we have a patient who is depressed and wants to commit suicide, who knows how many years they could have left if we intervene?” said Dr. Irwin, who has mentored Dr. Trachsel. “If we had the data that this person’s 90% likely to complete a suicide within the next year, it might change the conversation and treatment decisions.”

Dr. Lapid , a board-certified practitioner of palliative and hospice medicine and geriatric psychiatry at the Mayo Clinic in Rochester, Minn., agreed in an interview that for patients with an SPMI and no life-limiting comorbidity, it becomes complicated to attempt to define futility.

In palliative and hospice care, for the end-of-life piece, “we rely on a classic literature of functional trajectories at the end of life,” she said. “We know what the curve is for cancer, chronic medical conditions such as chronic obstructive pulmonary disease or chronic kidney disease, or even for dementia – but what about major depression, schizophrenia, or schizoaffective disorder? What does the end of life trajectory look like for them? That would be really important to know, because this knowledge will help us determine at what point they are in their life/disorder trajectory, which will help guide advanced care planning.”

Moreover, while Medicare and insurance have precisely detailed guidelines for hospice, which provides palliative care for those with a prognosis of 6 months or less, “there’s no psychiatric illness currently considered a terminal disease eligible for hospice care,” Dr. Lapid said.

Obstacles to access

Patients with SPMI die 25 years earlier than do their peers without SPMI. Most of the premature mortality associated with SPMI, which cuts across age groups, is attributable to chronic diseases rather than to violence or suicide. Less overall engagement with the health care system, leading to late treatment or undertreatment of disease, is one explanation for the premature mortality found among some people in this demographic.

In addition, studies have shown that individuals with SPMI have less access to palliative and hospice care. One study, for example, found that people with schizophrenia and a terminal illness went into hospice half as often as did people without SPMI ( Schizophr Res. 2012 Nov;141:241-6 ). In a recent editorial, a team of psychiatrists and pain specialists called such disparities “unacceptable” and demanded cross-collaboration to resolve them ( Gen Hospital Psych. 2017 Jan-Feb;44:1-3 ).

Dr. Lapid said one reason people with SPMI – with or without a life-limiting comorbidity – end up with less access to palliative and hospice care is that “the art of what we do in hospice and palliative care, advanced planning – is not something we do well or routinely in psychiatry.”

And palliative care specialists may find that for some people with severe mental illness, “it can be hard to really palliate their symptoms,” Dr. Lapid said.

Dr. Irwin noted that patients with SPMI and a terminal illness generally are not extended the same level of agency over their treatment choices as are people without it. Cancer patients, for example, can elect not to receive a treatment even when their prognosis is good. People with serious mental illness – even when they have life-limiting medical comorbidities – may not be given the option of deciding whether to opt for treatment.

Rebecca L. Bauer, MD, a psychosomatic medicine fellow at the Medical College of Wisconsin in Milwaukee, said that psychiatrists, including those with outpatient practices, are well positioned to help patients gain greater access to palliative care and end-of-life planning.

Dr. Bauer, the author of a paper exploring ethical considerations involved in end-of-life and palliative care in patients with SPMI, said people with chronic mental illness “don’t always have a strong support network, and we can’t always figure out what their wishes or desires are. They may have treatment-resistant aspects to their mental illness, and when you add on top a medical condition, it can be hard to figure out which to address first” ( Am J Psychiatry. Residents’ Journal 2016;11[5]:4-6 ).

These patients’ medical needs become so pressing at the end of life that psychiatric disease and the distress it inflicts end up a secondary concern, she said, resulting in the patient suffering.

Psychiatrists “can play an important role in removing some of these barriers,” Dr. Bauer said, especially on multidisciplinary teams. For one thing, psychiatrists are adept at prescribing medications aimed at treating concurrent psychiatric symptoms. In addition, they are more likely than are other clinicians to have experience in communicating with patients with psychosis or other thought disorders.

Another important way psychiatrists can help secure access to palliative care for their patients who need it, she said, is to engage patients during times of relative wellness by encouraging them to discuss end-of-life desires and plans, and help them create formal health care directives.

“We know that sometimes patients [with SPMI] are not as engaged in their primary and medical care, and sometimes the psychiatrist is the only provider they consistently follow up with,” Dr. Bauer said.

All the clinicians interviewed acknowledged that, regardless of the feasibility or ethical viability of any single approach, the idea of incorporating some of the pillars of palliative care for patients with SPMI merits more consideration.

The approach used by psychiatrists treating patients with SPMI is very palliative in approach, Dr. Irwin and Dr. Lapid said. Psychiatrists reduce symptoms and acknowledge that SPMIs are chronic diseases for which there is no cure. To palliate is to make comfortable, to reduce symptoms, to reduce distress and pain, and to relieve suffering and optimize quality of life.

“In cancer, we’ve been telling people for 30 years, ‘keep fighting, because tomorrow there could be a new cure.’ But there’ve been very few new cures,” Dr. Irwin said. “And while some people want to fight to the end in case that cure comes, there are many who would have rather known that there really was little chance and might have made different choices.” In psychiatry, for psychiatric illnesses, he continued, “we need to really start thinking about the course of a person’s life, their quality of life, and the likelihood that they will get better or meet their goals, and what is a tolerable symptom burden for them. Because in the end, these questions apply to all patients.”