Articles and News
When my 85-year old father took himself off dialysis and decided his multiple advanced terminal illnesses were sending him a message, his elite teaching hospital sent us to a large hospice organization in the region. Almost immediately we realized we were getting stock answers to our questions, and began to question whether our father, and our family, would get personalized care. We contacted a smaller hospice organization that saw us through the weeks ahead with compassion and care.
A recent “New Old Age” blog by Paula Span reminded me of a difficult question many of us have to face—and provided some guidance, if not quite answers. “How to Choose a Hospice” is the question at hand; and interviewee Naomi Naierman, founding president and CEO of the American Hospice Foundation (closing for lack of funding), has some important suggestions. Families and patients should know that in most localities there is a choice among hospices. Hospice care is no longer always delivered by local non-profit organizations: More often hospices are run by large for profit corporations—and not all hospices put the patient and family before the bottom line. This interview with Naierman offers great questions to ask of hospices and even more are included in Naierman’s guide, “Choosing a Hospice: 16 Questions to Ask.” …READ MORE…
News and Narratives of Interest – Fall 2013
Every once in a while you come across an article that makes you think: Ok, I can stop right here. “End of Life Tech Companies Grow with Changes in Death Traditions”in a June 2013 issue of The Huffington Post is just that article. It will give you a great review of new web-based end of life information and planning resources. Yes, you still need LiveWithCare.org to help you access resources and information specific to Westchester County, but in combination with these other sites, you will be all set.
LiveWithCare.org is a new website, a project of the Westchester End-of-Life Coalition. It is a unique tool for Westchester residents. It shows how to prepare in advance for serious health care issues and guides you through steps that can be taken in case you are diagnosed and living with a serious illness; it also helps you cope with issues around the death of family member. …READ MORE…
News and Narratives of Interest-Feb 2013
An article in the fall 2012 issue of the Health Advocacy Bulletin, The Journal of the Health Advocacy Program at Sarah Lawrence College, by Vicki Breitbart, Director of the Program and one of WELC’s Advisory Board Members, addresses a situation experienced by many of us as caregivers for elderly parents.
Vicki’s mother, age 93 and living independently, began to steadily decline, losing sight, hearing, and mobility. When she was admitted to the hospital for surgery, the downward spiral was accelerated by a cascade of interventions, poor communication, uncoordinated care, and challenges to her agency. “With all my knowledge about the health care system, we still were caught in the irrational, uncoordinated and often chaotic care for the elderly ill and dying,” writes Vicki. …READ MORE…
By JOSEPH SACCO, M.D.
The family seated opposite me is tense. Having met at the bedside of a critically ill patient only moments earlier, we have gathered in a quiet alcove next to the intensive care unit to discuss what can only be bad news.
The patient — someone’s spouse, parent, child — is dying. As a palliative care specialist, I am to explain this with clarity and empathy and elicit an informed decision about what to do next.
This encounter has come after days, weeks or even months of terrible emotional and physical anguish, avalanches of bewildering, conflicting information and opinion, hopes raised and lost, and long vigils in the family waiting area. Now, it is the opinion of the I.C.U. staff that survival is no longer an option, and I share this opinion. …READ MORE…
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
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.
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.
• “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.
• 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
• If unwilling to provide information and counseling, refer to another physician or NP.
• 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.
• New York State Department of Health website, questions and answers and guidance for
• 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
• 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.”
• 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
• 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
• 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.