The American population is getting older and sicker. More Americans are facing life-threatening illness when approaching end of life. Palliative care has grown to meet the complex needs of this population.
And yet, according to a 2017 article in the journal Palliative Care, many people living with a chronic life-threatening illness either do not receive any palliative care, or receive services only in the last phase of their illness. The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care also addressed this issue, stating that a goal of their recently updated guidelines is "to improve access to quality palliative care for all people with serious illness regardless of setting, diagnosis, prognosis, or age."
There may be many reasons why patients do not access palliative care services. But it's likely that greater awareness of what palliative care is, and who can benefit from it, may lead to greater adoption of these services.
The philosophy of palliative care
Palliative care improves the quality of life, comfort, and resilience of seriously ill patients as well as their families. Seriously ill patients are those with life-threatening medical conditions, like cancer, organ failure, or dementia, that negatively impact the patient's daily life or result in a high level of stress for the caregiver.
Palliative care utilizes an interdisciplinary team of physicians, nurses, social workers, and chaplains to assess and manage the physical, psychological, social, and spiritual stressors associated with serious illness. It can be provided by primary care physicians, specialists like cancer or heart doctors, palliative care specialists, home health agencies, private companies, and health systems.
Palliative care can look very different from patient to patient. For a patient with cancer, for example, the palliative care team collaborates with the cancer doctors to manage the pain caused by the cancer, the side effects caused by treatment, and the anxiety and spiritual suffering of having a cancer diagnosis. For a patient with heart failure, the team collaborates with the heart doctors to manage the shortness of breath that makes it hard to walk to the bathroom, the financial stress of being too sick to work, and the social isolation of not engaging in their usual activities. For a patient with dementia, the team collaborates with the primary care doctor to manage the patient's confusion and agitation while harnessing community resources such as a home health aide or visiting nurse to provide respite and support for the family.
This interdisciplinary approach can be provided throughout the course of an illness and across health care settings. It can span hospitals, clinics, long-term care, assisted living, rehabilitation, and correction facilities, as well as homeless shelters.
Who can benefit from palliative care?
Palliative care is available to all patients with serious illness regardless of age, prognosis, disease stage, or treatment choice. It is ideally provided early and throughout the illness, together with life-prolonging or curative treatments. In other words, patients don't have to choose between treatment for their illness and palliative care; they can have both.
Palliative care not only improves the quality of life of patients and their families, reducing mental and physical distress and discomfort, but also can help patients live longer. The prolonged survival is thought to be due to improved quality of life, appropriate administration of disease-directed treatments, and early referral to hospice for intensive symptom management and stabilization.
Palliative care and hospice care: Not one and the same
Although the overarching philosophy is similar, palliative and hospice care are distinct services. Hospice care is provided to patients near the end of life, with a high risk of dying in the next six months and who will no longer benefit from or have chosen to forego further disease-related treatment.
The focus switches from life-prolonging or curative treatment to comfort care. The interdisciplinary team provides quality medical care to make the patient as comfortable as possible, while supporting loved ones during the dying process and with bereavement support after death.
Hospice care can be provided in an individual's home, assisted living, long-term care, hospice facility, and in hospitals. Hospice care will neither hasten nor prolong the dying process; instead it will optimize the quality of life for the time remaining.
Making the most of palliative care services
If you or a loved one is living with serious illness, ask your primary or specialty care doctor for a palliative care referral. If palliative services are not available locally, your doctor may explore your palliative or hospice needs with you directly.
Use this discussion and the resulting services as an opportunity to:
- Assess and manage poorly controlled physical, psychological, social, and spiritual stressors.
- Understand your illness, its expected trajectory, and treatment options.
- Explore your hopes, worries, goals, and values; cultural or religious beliefs that impact your care or treatment decisions; treatments you may or may not want; what quality of life means to you.
- Discuss and document your health care proxy and end of life preferences, including medical interventions you do or do not want.
It is never too early to ask how palliative services can help you or your loved one live well. Learn more from the Center to Advance Palliative Care.