Compassion & Choices of New York has been playing a major leadership role
to have legislation enacted in New York State to ensure that people who are
terminally or seriously ill receive quality care and that their health
care wishes are respected. Some relevant legislation is described below. The
Palliative Care Information Act , the Palliative Care Education and
Training Act and the Health Care Proxy Education law were all initiated by
Compassion & Choices of New York.
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-of-life 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:
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.
Please also Contact Us at Compassion & Choices of New York for assistance.
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.
Please also Contact Us at Compassion & Choices of New York for assistance.
Family Health Care Decisions Act
The Family Health Care Decisions Act, Public Health Law,Article 29-CC
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.
Until this legislation was signed into law by Governor Paterson on March
16, 2010, in general, unless there was a health care agent appointed pursuant
to a completed health care proxy form, there was no legal basis for a
family member or friend to make health or end-of-life decisions on behalf of
the patient who lacked decision making capacity. Instead, decisions to
withdraw or withhold treatment could be made only where there was "clear and
convincing evidence" of the patient's wish to refuse such treatment. Moreover,
when a patient lacked capacity, family members lacked clear authority even
to consent to beneficial, desired treatment. While health care providers
routinely, and out of necessity, accepted treatment consent from a family
member or close friend for beneficial treatment, there was only thin legal
support in New York for that
practice.
Summary of Key Provisions of the FHCDA
- Applicability
Applies to decisions in general hospitals, residential health care
facilities and hospices.
Does not apply to decisions for patients:
- who have a health care agent or who have left prior treatment
instructions.
- who have a court-appointed guardian.
- for whom decisions about life-sustaining treatment may be made pursuant
to OMH or OPWDD surrogate decision making regulations.
- Determining Incapacity
Sets forth a hospital-based process to determine that a patient lacks
decisional
capacity. In general, the process requires an initial determination by the
attending
physician, and may require a concurring determination by a "health or
social services
practitioner," a broader category of professionals.
Requires special credentials for professionals when determining that the
patient lacks
capacity as a result of mental retardation or mental illness.
Provides that if the patient objects to the determination of incapacity, or
to the choice
of a surrogate, or to a surrogate's decisions, the patient's decisions
prevails unless a
court finds that the patient lacks capacity, or another legal basis exists
for overriding
the patient's decision.
- Decisions for Patients who Lack Capacity
- Sets forth, in order of priority, the persons who may act as a surrogate
decision maker
for the incapable patient, i.e.:
- an MHL Article 81 court-appointed guardian (if there is one);
- the spouse or domestic partner
- an adult son or daughter
- a parent
- a brother or sister
- a close friend (who could be another relative)
- Grants the surrogate the right to receive medical information and medical
records necessary to
make informed decisions about the patient's health care, including
diagnosis, prognosis and risks
and benefits of alternative treatment options.
- Grants the surrogate authority to make all health care decisions for the
patient that the
adult patient could make for himself or herself, subject to certain
standards and
limitations.
- States that health care providers do not need a surrogate's consent for a
health care
decision if the patient previously made the decision, either orally or in
writing.
- Requires the surrogate to decide about treatment based on the patient's
wishes, including
the patient's religious and moral beliefs, or, if the patient's wishes
are not reasonably
known and cannot with reasonable diligence be ascertained, based on the
best interests.
- Authorizes decisions to withhold or withdraw life-sustaining treatment if
treatment would
be an extraordinary burden to the patient and the patient is terminally
ill or permanently
unconscious, or if the patient has an irreversible or incurable condition
and the treatment
would involve such pain, suffering or other burden that it would
reasonably be deemed
inhumane or an extraordinary burden under the circumstances. Certain such
decisions
require ethics committee review.
- Authorizes the parent or guardian of a minor patient to decide about
life-sustaining
treatment, in accord with the same standards that apply to surrogate
decisions for adults.
- In addition, if a minor has the capacity to decide about life-sustaining
treatment, the
minor's consent is required to withhold or to stop treatment.
- Establishes a procedure for making health care decisions, other than
life-sustaining
treatment decisions, for adult patients who have lost decision-making
capacity and have
no available family member or friend to act as a surrogate.
Palliative Care Education and Training Act
The Palliative Care Education and Training Act was enacted in 2007.
Initiated by Compassion & Choices to improve palliative care and pain management,
it is the first bill of its kind in the nation. The legislation addresses,
in a number of meaningful ways, the urgent public health care crisis of
the undertreatment of pain. In summary, the legislation:
- Establishes a statewide advisory council on palliative care and
pain management;
- Create undergraduate and graduate palliative care training
programs;
- Establish Department of Health-designated Centers for Palliative
Care Excellence; and
- Authorize the Department of Health to certify one or more
palliative care resource centers to assist physicians in the treatment of patients
in pain.
Up to $4.5 million is authorized annually for the training programs.
Health Care Proxy Education Legislation
Legislation designed to increase the number of people who complete health
care proxies, initiated by Compassion & Choices of New York, was enacted in
2007. The law gives the Department of Health the authority to conduct
education and outreach programs for consumers, patients, and health care
providers relating to an advance directive, particularly a health care proxy, and
the need and importance for health care providers to play a leadership
role in discussing end-of-life care preferences and values with patients and
to provide patients with health care proxy forms.
