What kinds of things are included in palliative care?
Symptom Management
Patients with serious respiratory illness experience significant physical, psychological, emotional, and spiritual symptom burden despite being either undetected by clinicians or underreported by patients during clinical encounters. Accurate symptom assessment is imperative for the appropriate treatment of respiratory symptoms and can improve rates of symptom discussion between patients and doctors. Important symptoms to pay attention to include shortness of breath, cough, pain, fatigue, insomnia, anxiety and panic attacks, depression, and existential distress. Clinicians may offer pharmacological and non-pharmacological interventions for symptom management. One of the most underused, but most effective pharmacological therapies available for control of refractory breathlessness or cough are opiates/narcotics which can be safety used when taken in conjunction with other respiratory therapies targeted to a specific respiratory illness. Non-pharmacological approaches may include pulmonary rehabilitation, relaxation techniques such as yoga and massage, and respiratory support therapies.
Advance Care Planning
Another important facet of palliative care is to offer prognostication for patients with debilitating respiratory illness and discuss goals of care so that caregivers and clinicians can support patients in their illness journey and ensure care plans are in-line with their values, goals, and preferences. This may help reduce the psychosocial distress that caregivers may experience when patients with respiratory illness have acute breathlessness episodes and are unable to communicate their wishes. There are written forms such as advance directives, however, the selection of a health care proxy, who makes decisions for someone who cannot, and open communication among patients and their families are the most important part of this paradigm. Sometimes these conversations can be stressful, however, primary care physicians and pulmonary specialists are well positioned to have these conversations with patients given their unique advantage of having developed long-lasting relationships with their patients.
Caregiver Support
Caregivers are the individuals (e.g., spouses, partners, family members, or friends) that support the patient through their illness journey. Integration of palliative care practices helps clinicians in identifying caregivers and offering them support. Caregivers can have various roles ranging from emotional support to delivering basic medical aid. An example of the important role of caregivers are those who provide support to patients undergoing lung transplantation helping them get to appointments, supporting them emotionally, and reminding them to take their medications. Clinicians need to acknowledge caregivers and include them in routine clinic assessments and regular updates, while offering support through dissemination of information and resources, inclusion in decision making, or referral to support groups or counseling.
Who provides palliative care?
Palliative care for patients usually begins with primary care physicians and/or pulmonary and critical care clinicians who can address debilitating symptom management and control of breathlessness. This is complimented by referral to palliative care specialists (e.g., nurses, physicians, social workers, etc.) who offer additional advanced therapies focused on management of symptoms including pharmacological and non-pharmacological approaches. The provision of this specialist palliative care can occur in a variety of settings, but mainly occurs through inpatient services offered by consultation teams in the hospitals, in ambulatory clinics, or in community-based settings including patients’ home residences. Unfortunately, access to specialist palliative care is limited due to the scarcity of palliative care experts.
What is hospice and end of life care?
Sometimes palliative care is confused with end-of-life care or hospice care. While hospice and palliative care may be provided at the same time for patients at the very end of life, hospice is a special kind of care. Hospice provides compassionate care for patients and their families in the last phases of an incurable illness so they may be as comfortable as possible. Hospice care does not try to hasten or postpone death. Ideally, patients are referred in hospice in the final months of life and it provides family-centered care with support traditionally, at home. Hospice care usually includes regularly scheduled family meetings and the hospice team coordinates and supervises all care 7 days a week, 24 hours a day. Besides hospice care, other important components of end-of-life care are include respite or bereavement care. Respite care allows family or friends some time away from caregiving to get some much-needed rest. Bereavement is the period of mourning after a loss, and this involves the hospice care team supporting loved ones through the grieving process.
