During National Hospice and Palliative Care Month we honor all professionals who work in the broad field of palliative care and hospice work – this includes physicians, nurses, aides, social workers, physical therapists, and so much more. It is also the perfect time to learn more about hospice and palliative care and an opportunity to spread awareness of the immense benefits for patients and families.
By David Leven and Judith Schwarz
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. (Also, the article says, “Healthcare providers have a major role to play in improving palliative care knowledge. (Cancer Epidemiology Biomarkers Prevention, 6/4).
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. (Oncology Nursing News, https://www.oncnursingnews.com/view/nurses-have-the-responsibility-to-be-the-voice-of-the-patient-in-palliative-care-advocacy)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 a booklet that EOLCNY co-authored.- Palliative Care Information Booklet (also in Spanish)
Additionally, EOLCNY has a brief video to raise awareness – Three myths about palliative care
Other resources for information:Center to Advance Palliative CareHospice and Palliative Care Association of New York State
We at EOLCNY will continue to advocate for palliative care access and to educate professionals and community members.
End of Life Choices New York offers virtual presentations to explain what you can do to maximize your chances that you will stay comfortable if you become ill, and have a peaceful death if that time has come. We can present to a wide variety of audiences (in English and Spanish) including community groups, faith institutions, senior centers, and and professional organizations. Our speakers can discuss palliative care is and how and when it can benefit you, why pain is often under-treated and how you can get effective pain treatment, and how hospices provide for a better quality of life and a more peaceful death.
To book one of our presentations, or to find out more about them, please contact our Director of Education and Outreach, Lillian Mehran, at firstname.lastname@example.org
End of Life Choices New York and the CUNY Graduate School of Public Health and Health Policy are conducting research to understand the end of life needs, views, and experiences of Black New Yorkers who served as a caregiver for a loved one at the end of their life. You may be eligible if you are Black, live in New York, are between the ages of 25-65, and were a caregiver to a loved one that died within the last 15 years. To participate, please visit endoflifechoicesny.org/survey. Please share with your network.
End of Life Choices New York seeks to expand choice at the end of life, respecting every individual’s wishes, and striving for the best possible quality of life and a peaceful death. We depend on your support to do this work. If you are able to help, please Donate to make a tax-deductible contribution.