Melanoma: Palliative and End-of-Life Care

"Medical Journeys" is a set of clinical resources reviewed by doctors, meant for physicians and other healthcare professionals as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.

Palliative care and end-of-life care have a number of characteristics and goals in common, yet differ distinctly in the timing and setting of intervention. Both types of care focus on improving or maintaining a patient's quality of life. Both employ some of the same methods to relieve pain and other disease-associated symptoms and improve patient comfort. Palliative and end-of-life care incorporate multidisciplinary strategies to address the "whole person" within each patient, including psychological, social, and spiritual needs.

One key distinguishing feature of palliative care is that it can be implemented at any point in the medical journey of a patient with melanoma or any other type of cancer or serious, potentially life-threatening condition. Though often associated with advanced cancer, the tools of palliative care apply to all disease stages and to patients of all ages. Additionally, palliative care can occur by itself or alongside curative treatment for cancer.

In contrast, end-of-life care begins when a patient's healthcare team has determined that the cancer can no longer be cured or even controlled. In most cases, cancer treatment ends, but efforts to make the patient as comfortable as possible continue and may be expanded.

Timing of Palliative Care

The American Society of Clinical Oncology (ASCO) recommends that all patients with advanced cancer have an assessment for palliative care needs within 8 weeks of diagnosis. Ideally, an interdisciplinary palliative care team should evaluate the patient. However, resource limitations, lack of insurance coverage, and other factors may place limitations on the assessment.

Historically, palliative interventions have been delayed until end of life, and many oncology practices still delay the assessment for palliative care. A retrospective comparison of patients with cancer who received early versus late referral for palliative care showed that early referral was associated with lower utilization rates for inpatient, intensive care, and emergency department care during the last month of life and a lower cost of almost $7,000 for care during the last 6 months of life.

A review of more than a dozen randomized trials of usual cancer care with or without concurrent palliative care showed a pattern of benefits with the addition of palliative care with respect to quality-of-life, symptom relief, improvement in depression and emotional distress, and in some cases, longer survival and cost savings. No study suggested harmful effects of palliative care.

A meta-analysis of 43 randomized trials showed a consistent association between palliative care and advance-care planning, patient and caregiver satisfaction, and lower healthcare utilization. However, the range and intensity of interventions varied substantially and not all were applicable to patients with cancer.

The National Comprehensive Cancer Network (NCCN) supports screening all patients with cancer for palliative care needs at the initial visit and then at appropriate intervals thereafter, or as clinically indicated. Patients, their families, and caregivers should be informed that palliative care is an integral component of comprehensive cancer care. NCCN recommends integration of palliative care into cancer care "both as part of usual oncology care and for patients with specialty palliative care needs."

Components of Palliative Care

The broad definition of palliative care encompasses myriad interventions and services that might benefit patients. In addition to the guideline on palliative care, the NCCN has developed multiple guidelines under the umbrella of "supportive care." The individual guidelines offer specific recommendations for cancer pain, use of antiemetics, cancer-related venous thromboembolic disease, fatigue, distress management, hematopoietic cell transplantation, hematopoietic growth factors, immunotherapy-related toxicities, smoking cessation, and cancer-related infections.

The authors of a primer on integrating the ASCO guidelines on palliative care with oncology care recommend use of formal assessment tools or questionnaires for symptom status, spirituality issues, and psychosocial status, including distress. Patients' knowledge and understanding of their condition and treatment should also be assessed. Additionally, tools are available to evaluate the impact of cancer on family members and caregivers.

Implementation of Palliative Care

If feasible, a patient should have monthly palliative care visits. Visits can be in person, by telephone, or via teleconference. If a multidisciplinary palliative care team is not feasible, one or more designated individuals can coordinate the visits. Palliative care teams reflect the make-up of oncology teams with physicians and advance practitioners. Information gained from the visits can provide insight on helpful adjustments to the patient's treatment and involvement of other providers, such as pain management, radiation oncologists, a psychologist or psychiatrist, or even social workers or a hospital chaplain.

The palliative care visit should include an assessment of the patient's understanding of their disease process and treatment, expectations, goals, and priorities, as well as preferences for receiving medical information. As appropriate, the visit should be a time to review realistic options and manage patient expectations. Above all, encourage the patient to share feelings or concerns and to ask questions. For example, a study of spiritual support for patients with advanced cancer showed that 87% of patients wanted their doctors to know about their spiritual needs, but only 6% were ever asked.

NCCN recommends a palliative care assessment at initial diagnosis of cancer and periodic follow-up visits or as clinically indicated. Indications for palliative care include:

• Uncontrolled symptoms

• Moderate-to-severe distress related to the diagnosis and/or treatment

• Serious comorbid physical or psychiatric conditions

• Complex psychosocial needs

• Patient/family/caregiver concerns about the disease course and decision-making

• Spiritual/existential distress

• Patient request for hastened death

• Advanced cancer associated with high morbidity and mortality

• Poor prognostic awareness

• Evidence of worsening prognosis

The NCCN guidelines include detailed recommendations for managing specific types of symptoms and complications in patients with advanced melanoma and other cancers: pain, dyspnea, anorexia/cachexia, nausea/vomiting, sleep disturbance, constipation, diarrhea, and delirium. Additionally, the guidelines have recommendations related to social support and resource management.

End-of-Life Care

When a cancer can no longer be controlled, testing and cancer-directed treatment stop, but patient care continues. The clinical emphasis shifts entirely to improving the patient's quality of life and that of the family and caregiver(s).

End-of-life care can occur in a hospital, at home, or in another type of facility. The range of services focuses on a patient's comfort and quality of life, including medical, psychological, social, and spiritual issues. End-of-life care also involves the needs, concerns, and questions of family members and caregivers.

The end-of-life experience differs for each patient. Signs and symptoms of late-stage cancer vary according to the type of cancer, and each patient, as well as the family and caregivers, has unique needs with respect to information and support.

Preparing for the End

Much of the healthcare providers' responsibility involves preparing patients, families, and caregivers for end of life, and if appropriate or desirable, transition to hospice care. A survey of acute-care hospitals showed significant discordance between patients' stated values and corresponding treatment preferences for end-of-life care. The finding underscored the need for medical decision support to make sure that patient preferences were based on a clear understanding of their condition and end-of-life treatment options.

Advance-care planning should begin early for patients with life expectancy estimated in years or months to years. Providers should initiate clear and consistent discussion with the patient, family, and caregivers about the prognosis and anticipated care needs. Providers should also ask about preferences with respect to end-of-life care and determine a patient's eligibility and readiness for hospice care. A "hospice information" discussion with the oncologist may help with the transition to hospice care.

For patients with a life expectancy of months to weeks or less, the care team should assess patient/family/caregiver understanding of the dying process and provide education as needed. Need for transitional care and potential referral to hospice care should also be evaluated.

If a patient/family/caregiver requests hastened death or medical aid in dying (MAID), the American Academy of Hospice and Palliative Medicine has published a position statement and advisory brief that provide guidance for healthcare professionals with respect to evaluating and responding to such a request. MAID is legal in some states but not in the majority. Euthanasia is not legal in any state. Physicians and other healthcare professionals should know the legal status of MAID in their state, as legislation is pending in several states.

Hospitals and other facilities should have clear end-of-life care policies and procedures, and healthcare professionals should understand them. The care team should ensure that a patient's advance directive is documented and respected, as well as the patient/family/caregiver wishes regarding in-facility resuscitation. Policies regarding resuscitation (Do Not Resuscitate, Do Not Attempt Resuscitation, Allow Natural Death) may differ depending on the treatment setting. Some states have adopted Medical Orders for Life-Sustaining Treatment/Physician Orders for Life-Sustaining Treatment (MOLST/POLST), which protect patient wishes across all treatment settings.

A Peaceful Death

The current version of the NCCN guidelines is the first to recognize death as an expected outcome. Multiple studies have attempted to define a "good death" or a "peaceful death" from the perspective of clinicians, patients, and families. One study showed that the three groups have similar concepts of a peaceful death, with all three ranking freedom from pain, being at spiritual peace, and being with family among the top considerations.

The NCCN defines peaceful death as "one that is free from avoidable distress and suffering for patients, families, and caregivers; in general according with patient's and family's wishes; and consistent with clinical, cultural and ethical standards."

Read previous installments in this Medical Journeys series:

Part 1: Melanoma: Epidemiology, Diagnosis, and Treatment

Part 2: Recognizing Melanoma: What It Is, What It Isn't

Part 3: Basics of Melanoma Diagnosis

Part 4: Case Study: The Dangers of Melanoma Recurrence

Part 5: Managing Early-Stage Melanoma

Part 6: Managing Unresectable/Metastatic Melanoma: What to Know

Part 7: Case Study: Did This Melanoma Metastasize or Is It Something Else?

Part 8: Sorting Through Therapeutic Options for Advanced Melanoma

Part 9: Recurrent Melanoma: Navigating the Clinical Pathways

Part 10: Melanoma: Follow-Up Fine Points