The World Health Organization defines palliative care (PC) as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention of and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual.” To meet these multidimensional needs, PC is usually provided by a team including physicians, nurses, social workers, and chaplains. Patients can receive PC at any time along the trajectory of a serious or life-threatening illness. (This is distinguished from hospice care, a subset of PC that is reserved for end of life treatment.) PC can also be provided in conjunction with treatments aimed at life prolongation. For example, a patient with metastatic breast cancer may be treated by an oncologist who focuses on cancer treatment while a PC team focuses on management of symptoms (pain, nausea, shortness of breath, depression, anorexia, fatigue, spiritual distress, etc) and assists with advance care planning.
In the United States, PC is generally provided as an inpatient or outpatient consultation. Providers may request a PC consultation to assist with clarification of the patient’s goals of medical care, symptom management, communication between the medical team(s) and the patient and family, prognostication in advanced illness, advance care planning, and end of life (EOL) care. For instance, a common consultation is to help a patient with advanced liver disease to understand the severity of the illness and treatment options, and to manage pain, shortness of breath, and nausea.
The ultimate goals of consultation are to treat symptoms of advanced illness and to assist patients and families in understanding their prognosis, in expressing the goals (or most important factors) in their medical care, and in receiving medical care that is aimed at achieving their goals of care. For example, is the patient with liver disease more interested in staying in the hospital to receive intravenous therapies of marginal benefit or in returning home to spend time with family and friends?
Hospice Care
Hospice care, by contrast, is a specific type of palliative care for patients nearing the end of life. In the United States, hospice refers to a healthcare benefit provided through Medicare Part A or private insurance. A patient is eligible to receive hospice care if two physicians certify that he or she has a life expectancy of six months or less if the “disease runs its usual course.” In addition, the patient must choose to trade standard Medicare Part A (inpatient) coverage for the hospice benefit, which covers medical care that is usually provided in the home and is focused on comfort and relief of suffering rather than life prolongation. Patients with any end-stage disease (heart failure, dementia, COPD, HIV, cancer) are appropriate for hospice referral. Hospice care is the form of PC that most physicians are familiar with; however PC is a much broader discipline.
Discussing End of Life Care with Patients
In addition to focusing on the relief of suffering, palliative providers are often involved in discussions about advance care planning and EOL care. For example, we may discuss prognosis, current treatment options, and options for future care with a patient with end-stage COPD. Specifically we would talk about what is most important to the patient in the time they have left to live and how their medical care can help them to achieve these goals. We would review if the patient is interested in intubation/ICU care or care that is entirely focused on their comfort in the event of a future COPD exacerbation.
There is a robust body of literature demonstrating that the majority of patients want to have these discussions with their providers, yet fewer than 50% of patients actually do (Reilly et al, Arch Intern Med 1994:154(20):2299–2308). Providers often cite barriers to having these conversations, such as a lack of training, lack of time, and concern that such discussions may harm patients or “take away their hope.”
Multiple studies have evaluated the effects of these conversations on patients’ treatment choices, quality of life, and mental health in addition to the effects on caregivers’ quality of life, mental health, and perception of the patient’s death. The Coping With Cancer study was a multisite prospective cohort study of 332 patients with metastatic cancer who progressed through first-line chemotherapy, and their caregivers (Wright et al, JAMA 2008:300(14):1665–1673). The 37% of patient/caregiver dyads who reported having a discussion about end of life care with their providers were compared to the dyads who reported not having these conversations. The patients who had the discussions were more likely to prefer medical care focused on relief of pain and suffering over life-extending treatments. These patients also were more likely to complete a DNR order and less likely to be admitted to the ICU, receive mechanical ventilation, or undergo a resuscitation attempt. Interestingly, patients who received less aggressive care experienced a better quality of life without a decrement in survival time. EOL discussions were not associated with patients feeling depressed, sad, terrified, or worried or meeting DSM criteria for a psychiatric disorder.
Their caregivers benefitted, too. Caregivers of patients who received aggressive care in the last week of life were more likely to develop major depressive disorder, experience regret, feel unprepared for the patient’s death, and report poorer quality of life and health after the patient’s death. This study supports the concept that EOL discussions and less aggressive EOL medical care are associated with better quality of life among patients and their caregivers.
Patients report that the manner in which EOL discussions are held is as important as the content of the discussions. According to current research, cancer patients in Western countries want realistic, truthful information that is delivered with a focus on what can be done (symptom management, emotional support, practical support, and maintenance of dignity). They value discussions in which the provider explores realistic goals as a means of fostering hope. Such goals might include control of pain and shortness of breath so patients can spend more time talking with their families. Patients feel that a discussion of what the future may hold should be well-timed. They want the information to be given when loved ones can be present and when the provider can spend an adequate amount of time with them. Lastly, patients value respect for their emotional state and an acknowledgement of the emotional, spiritual, and existential impact of having a life-threatening illness.
TCPR’S VERDICT: Given the heavy emotional burden associated with advanced illness, there has always been a significant role for psychiatry in PC. An important demonstration of this role is the inclusion of psychiatry as a specialty supporting the subspecialty of Hospice and Palliative Medicine. The challenge ahead is to further develop strategies for advancing the collaboration between providers of palliative and psychiatric care.
