Articles and News
Emerging Issues in Palliative Care Program
Date: Tuesday December 6th, 2011
Location: Cardoza Law School, 55 5th Avenue, NYC, Room 204
See Flyer for Details:
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Protect your wishes by filling out health care proxy
By David C. Leven and Mary Beth Morrissey
In February a new patient’s rights law, the Palliative Care Information Act, became effective in New York. Terminally ill patients now have the right to receive information and counseling regarding palliative care and end-of-life options. Many of us, when terminally ill, will no longer have decision-making capacity and will not be able to make decisions about those options. What if we have not appointed a health care agent to make decisions for us and no one knows what treatment we would want or not want? Would decisions be made for us contrary to what we would have decided?
Too many times we have heard, and you may have as well, stories about people no longer able to make health care decisions for themselves, suffering terribly at the end of their lives, and being kept alive on machines because no one knew their health care wishes. Many of us have in fact considered our end-of-life treatment preferences and, of course, expect and want them to be honored. Still, only about 30 percent of us have communicated these preferences to loved ones or our doctors and have actually appointed a health care agent to make health care decisions if we lose decision-making capacity. The time to appoint a trusted person to make these decisions for us and to have conversations with our loved ones and doctors about our goals of care is now, while we are healthy. This is a gift to our loved ones and ourselves.
READ FULL ARTICLE: The_Journal_News_HCP_41611
Family Health Care Decisions Act Summary
The Family Health Care Decisions Act establishes the authority of a patient’s family member or close friend to make health care decisions for the patient in cases where a patient lacks decisional capacity and did not leave prior instructions or appoint a health care agent. The family member or close friend’s decision making authority would include the authority to direct the withdrawal or withholding of life-sustaining treatment when standards set forth in the statute are satisfied.
Palliative Care Information Act
The Palliative Care Information Act (PCIA), Public Health Law, Section 2997-c, effective February,
2011, is a critically important patients’ rights law and a model for the nation. Terminally ill patients now
have a clearly defined right to receive information and counseling about their palliative care and end-oflife
options, including hospice. This will enable them to make informed treatment decisions during the
final months of their lives. The law states:
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.
Definitions:
• “Palliative Care:” Health Care treatment, including interdisciplinary end-of-life care, and
consultation with patients and family members, to prevent or relieve pain and suffering and to
enhance the patient’s quality of life, including hospice care.
• “Terminal Illness or Condition:” Reasonably expected to cause death within 6 months.
“Appropriate.” Consistent with applicable legal, health and professional standards, the patient’s
clinical and other circumstances ; and the patient’s reasonably known wishes and beliefs.
• “Attending health care practitioner” a physician or nurse practitioner who has primary
responsibility for the care and treatment of the patient. Where more than one physician or nurse
practitioner share that responsibility, each of them has responsibility [to offer information and
counseling], unless they agree to assign that responsibility to one of them.
Compliance:
• Offer to provide information and counseling:
– Patient accepts:
• Provide information and counseling directly
• Arrange for another physician, NP or professionally qualified person to provide the information
and counseling;
• If unwilling to provide information and counseling, refer to another physician or NP.
–Patient declines:
• Patient is not provided with information.
• Information can be provided orally or in writing.
• Information and counseling shall be provided to a person with authority to make health care
decisions for the patient if the patient lacks decision making capacity.
If you are a patient who may have a terminal illness or a health care professional working with a patient
whom you believe may have a terminal illness, and an attending health care practitioner has not yet
offered information and counseling, then you may want to discuss this with the attending.
Resources:
• New York State Department of Health website, questions and answers and guidance for
practitioners, http://www.health.ny.gov/professionals/patients/patient_rights/palliative_care/
• Hospice and Palliative Care Association of New York State, Palliative Care Information Act
Resource Center, available to members, http://www.hpcanys.org/members/PCIA/ or for CD
purchase for non members.
Studies Demonstrate the Need for the PCIA:
• Dying patients are not informed or sufficiently informed of diagnosis, prognosis and treatment
options.
• The vast majority of dying patients in fact want to know their diagnosis and prognosis.
• The lack of physician-patient end-of-life discussions results in hospice referrals only very near
death or not at all.
• EOL discussion patients have a better quality of life and better deaths and may even live longer.
• Costs are reduced.
Palliative Care Access Act (PCAA) effective September, 2011:
According to the NYS Department of Health, “Like the PCIA, the PCAA is intended to ensure that
patients are fully informed of the options available to them when they are faced with a serious illness or
condition, so that they are empowered to make choices consistent with their goals of care, and wishes and
beliefs, and to optimize their quality of life. The law is not intended…to discourage conversations about
palliative care with patients who have distressing symptoms and serious conditions, but do not technically
fall within the law’s requirements. Palliative care and disease-modifying therapies are not mutually
exclusive. Patients may opt to pursue palliative care while also pursuing aggressive treatment. Palliative
care may be provided together with life-prolonging or curative care or as the main focus of care.”
The PCAA:
• Expands on the PCIA, new Public Health Law, Section 2997-d
• Applies to hospitals, nursing homes, home care agencies and enhanced and special needs assisted
living residences.
• Applies to patients with “advanced, life limiting conditions and illnesses”.
• Requires providers to establish policies and procedures to:
• Identify patients who might benefit from palliative care, (defined as in the PCIA) and pain
management services,
• Provide access to information and counseling concerning palliative care and pain management
appropriate to the patient, and
• Facilitate access to appropriate palliative care and pain management consultations and services.
As with the PCIA, if you are a patient or a health care professional working with a patient to whom the
PCAA applies, and access to information and counseling concerning palliative care and pain management
has not been provided and/or access to appropriate palliative care and pain management consultation and
services has not been facilitated by the health care facility, then you may want to discuss this with an
appropriate health care professional in the facility.
A Heartfelt Appeal for a Graceful Exit
By Jane E. Brody
February 5, 2008
After reading the Personal Health column on Nov. 27 on preventing geriatric suicide, Gloria C. Phares, a 93-year-old retired teacher in Missouri, wrote:
“I was healthy until 90, and then Boom! Atrial fibrillation; deaf, can’t enjoy music or hear a voice unless 10 inches from my ear; fell, fractured my thigh and am now a cripple; had a slight stroke the day after my beloved husband died after 61 years of marriage.
“I’ve lived a happy life, but from here on out it’s all downhill. Is there any point in my living any longer? I’m not living — just existing. I very much want to die, but our society doesn’t let me. Oh for a pill to ease myself out and end my pain, pain, pain.” …READ MORE…
Doctors’ Recognition of Approaching Death in Terminal Patients Seen Unreliable
By Will Boggs, MD
NEW YORK (Reuters Health) Aug 17 – Physician estimates of survival in terminally ill cancer patients are quite imprecise, especially for patients near death, according to findings published in the August 1st issue of the Journal of Clinical Oncology. …READ MORE…
Terminal Patients Prefer Less Costly In-Home End-of-Life Care
By David Douglas
NEW YORK (Reuters Health) Aug 03 – In-home palliative care for terminally ill patients can improve patient satisfaction while reducing medical care costs, researchers report in the July issue of the Journal of the American Geriatric Society. The team says the findings provide “strong evidence for reforming end-of-life care.” …READ MORE…