By David C. Leven, JD & Judith Schwarz, PhD, RN
Many people are unfamiliar with palliative care and unaware of its many benefits. One consequence of that lack of awareness is the needless suffering that many patients endure as their disease progresses and their quality of life diminishes.
A definition of palliative care adopted by the Center to Advance Palliative Care includes the following:
Some of the specific things that palliative care addresses include such physical symptoms as pain, nausea, breathlessness, fatigue, constipation and loss of appetite, in addition to feelings of anxiety and depression and other psycho-social and spiritual issues.
As important as palliative care is for many patients, a recent study found that knowledge of palliative care is low. Of 3,450 people surveyed, 89% had “inadequate knowledge of palliative care.” The study calls for improved public health education. The article notes that, “Healthcare providers have a major role to play in improving palliative care knowledge. It also notes that nurses are more likely to seek palliative care consults than some of their physician colleagues who may not recognize the benefit these specialists can provide to suffering patients. A summary of the article may be found in Oncology Nursing News here.
If patients were better informed about palliative care they or their health care agents will be better prepared to advocate for appropriate and timely palliative care.
In New York, pursuant to the Palliative Care Access Act, all hospitals and nursing homes must have policies in place to ensure that patients with life limiting illnesses, who might benefit, will receive palliative care. Although not all hospitals have robust palliative care services, their numbers are growing, and patients or family members ought to enquire about its availability in their hospital..
And, in New York, pursuant to the Palliative Care Information Act, which End of Life Choices New York initiated, terminally ill patients have a clearly defined right to receive information and counseling about their palliative care and end-of-life options, including hospice. This enables them to make informed treatment decisions during the final months of their lives. The law states in part:
“If a patient is diagnosed with a terminal illness or condition, the patient’s attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate to the patient, including but not limited to: the range of options appropriate to the patient; the prognosis, risks and benefits of the various options; and the patient’s legal rights to comprehensive pain and symptom management at the end of life; and information regarding other appropriate treatment options should the patient wish to initiate or continue treatment.”
For more comprehensive information on palliative care in New York, please review the Palliative Care in New York guide that End of Life Choices New York (EOLCNY) co-authored. It is also available in Spanish here. We have also prepared two videos on palliative care, one about COVID-19 and palliative care and another on myths about palliative care. Please consider viewing and sharing these resources.
We at EOLCNY will continue to advocate for palliative care access and to educate professionals and community members.
For additional help and information, please contact EOLCNY Clinical Director Judith Schwarz, RN, PhD, email@example.com, 212 252 2015.
David Leven, JD, is Executive Director Emeritus and Senior Consultant, End of Life Choices New York.
Judith Schwarz, RN, PhD, is Clinical Director, End of Life Choices New York.