What is Palliative Care’s Role When Caring for Patients with a Serious Mental Illness?

You may wonder about your palliative care team’s role and responsibilities when you are caring for a patient with a serious mental illness. It depends in part on when you encounter the patient—and when they develop their mental health issue. What we do know is that research has shown it is common; depending upon patient population, approximately 20-50% of adult palliative care patients will have some level of mental illness or severe psychological distress.

Some patients already have a mental health issue when their serious physical illness is diagnosed, in which case they may also have a pre-existing relationship with a team that is helping them manage their mental health condition. But other patients may develop a psychiatric illness in response to or in tandem with their serious physical illness. In other cases, the psychiatric issue itself may be the palliative care issue.

In any of these cases, there may be opportunities for palliative care specialists to help patients cope with their diagnoses and achieve the best possible quality of life, so familiarizing yourself with the possibilities will help you be better prepared.

On your palliative care service, you may encounter patients who already struggled with a mental health issue before they were diagnosed with a serious physical illness. These patients may be:

This category includes people who struggle but are still able to function, at least in some capacity, at work and in their relationships. People who have generalized anxiety disorder, mild depression, or well-managed obsessive compulsive disorder would fall into this category. All palliative care teams should be equipped to identify and address these mental health issues, whether directly or by ensuring that the patient is receiving appropriate care from a clinical team with whom they have an existing relationship.

This category includes patients with schizophrenia, bipolar disorder, severe major depressive disorder, and schizoaffective disorder.

A major obstacle for many patients with serious mental illness is compliance with treatment. Many of the symptoms of these psychiatric illnesses can be diminished with medication, but some patients don’t experience satisfactory relief—or they experience serious side effects that deter them from taking their medication.

There are many reasons that a patient with mental health issues may struggle to follow a medication regimen. For example, some patients don’t take their medication because they are distressed by the weight gain that accompanies their treatments. Atypical antipsychotics like olanzapine (Zyprexa), clozapine (Clozaril), quetiapine (Seroquel), and risperidone (Risperdal) are associated with a high risk of weight gain and corresponding cardiovascular risk factors that raise the risk of heart disease. The weight gain occurs quickly after patients start taking the medication, and many patients continue to gain weight over the long term. Another example: some patients with bipolar disorder stop taking their meds because they don’t feel they need them anymore—or the ‘highs’ of their manic episodes are pleasurable enough that they may take their chances on suffering through the depressive episodes.

Some people with severe mental illness who haven’t found a satisfactory treatment may turn to other substances, like alcohol or even opiates, to self-treat. Research also shows a relatively high rate of nicotine use among patients with schizophrenia, who turn to smoking because nicotine can help to ameliorate some of their psychiatric symptoms. For patients with COPD, lung cancer, or other lung diseases, palliative care teams can help by supporting patients through a transition to less dangerous nicotine delivery systems such as a patch or lozenge. Net/net, when you encounter a patient who has a pre-existing mental health condition, you may need to be mindful of the risk for non-compliance with treatment (for the mental illness or the serious physical illness) and/or substance use disorder.

Of course, not every patient receiving palliative care starts out with a mental health issue. But some of your patients may develop one along the way, and you also want to be sensitive to that possibility.

Consider a patient who has no pre-existing mental health issues who then is diagnosed with a serious physical illness like cancer. It’s not unusual for cancer to create an abundance of worry or stress, so that could lead to the development of an adjustment disorder, which is a significant impairment in functioning due to a stressful or traumatic event. That adjustment disorder may then evolve into a condition that we’d characterize as the “walking worried.” From there, patients may even develop a serious mental health issue. A mental health condition affects a patient’s quality of life, and it’s appropriate to consider it or treat it as a palliative care concern. Routine screening for anxiety and depression is a component of high-quality palliative care, and the palliative care team should be equipped to address a positive screen.

As a palliative care clinician, you may be consulted on a case where a patient has a serious mental health condition. As with all of our patients and families, we can assist them in considering the path ahead and what they want (or need) to know as part of the goals-of-care conversation. For example, a patient with bipolar disorder who has severe CHF may not want to choose a treatment that requires daily visits to the hospital, or four times a day medications, due to their unpredictable sleep schedule.

• Before you enter a patient’s room, evaluate your own feelings. Patients are aware if you are worried or scared about seeing them. You may need to make some adjustments before walking into that room. You may also want to consider calling the psychiatrist to understand the patient’s current mental status, or have the nurse or family member join you during the visit if you don’t feel comfortable.
• Keep in mind that some psychiatric patients may have been committed to a hospital against their will in the past. They could have negative feelings about seeing medical providers or being in a medical facility, which could lead to baseline feelings of fear or anger that have nothing to do with you.
• Remember that the mental illness affects how the patient engages with you. Depending on their diagnosis, they may be paranoid or suspicious of you. Be prepared that they may not be able or willing to answer questions directly. Some may even make inappropriate comments.
• Talk and move slowly, as some patients with serious mental illness may have trouble focusing on the conversation due to auditory hallucinations, rapid thoughts, or poor impulse control.
• Remember that having a serious mental illness doesn’t equal having an intellectual disability. Most patients can understand their diagnosis, potential consequences of treatment, or whether they are dying, just like any other patient. Ensure you are communicating the right information about their condition to them.

Palliative care is a team sport. We need all the different members of the team, including physicians, nurses, chaplains, and social workers to successfully provide care for patients and their families.

When it comes to patients with mental illness, we may need to collaborate with even more health care professionals to make sure we’re meeting our patients’ needs. Many patients with serious mental illness receive treatment at community mental health centers, where they may also receive their primary care in a shared office setting. They may also be receiving daily visits from a home mental health team member to ensure compliance with their medications. We can learn a great deal by communicating with these providers, who often have extensive knowledge about patients’ lives, resources, and abilities. They can help us assess the feasibility of a treatment plan for a patient.

Especially if you are seeing a patient with a serious mental illness, it’s important to identify and evaluate what types of services or care they are receiving elsewhere—if any. It’s not uncommon for patients to “fall out of the system” when they don’t receive clear mental health support, so you may be able to help them significantly, both psychiatrically and medically, by helping them plug back into services.

I would also encourage you to communicate with your psychiatry service lines to ensure that all patients living with serious illness in your area are offered the opportunity to receive palliative care. Many may not even realize it’s an option that could provide significant benefits.

CAPC members can take the Anxiety and Depression courses in our Symptom Management unit, and earn free CE/CMEs. Check to see if you are part of a CAPC member organization.

Edited by Melissa Scholl. Clinical review by Andrew Esch, MD, MBA.