Empowering Patients in End-of-Life Care Decision Making
By Mary E. O'Dowd and Betsy Ryan
By Mary E. O'Dowd and Betsy Ryan
November is National Hospice and Palliative Care Month, which focuses on increasing understanding and awareness of care at the end of life. This observance serves as a reminder to individuals to plan ahead for end-of-life care decision-making.
Far too many people wait until they are in the midst of a health care crisis before thinking about what options are available or what care they or their loved ones would want. A recent survey, conducted by the Conversation Project, reported that more than 9 in 10 Americans think it is important to discuss their wishes for end-of-life care, however only 3 in 10 have actually had these discussions. And while these discussions usually center around serious issues at the end of life, it's never too early for any of us - young or old, healthy or not - to plan and prepare for our future healthcare decisions.
End-of-life raises many difficult and emotional issues, which weigh heavily on the patient and family and are often complicated by inadequate planning. By reviewing options for care and having discussions in advance, individuals can alleviate some of the challenges that come along with a serious illness.
Individuals should consider what type of care and treatment they would prefer near the end-of-life. For example, as part of planning they may want to review palliative care and hospice programs. Palliative care focuses on improving life and providing comfort to people of all ages with serious, chronic, and life-threatening illnesses. Hospice programs provide medical services, emotional support and spiritual resources for those with terminal illness. Hospice also offers support to family members as they face the challenge of caring for a loved one with a terminal illness. Individuals may also want to consider specific medical interventions they would like to have when they are near the end of life. Some people would prefer to have every medical treatment taken to prolong their life, while others may not want to have their life sustained with medical support such as the use of a ventilator or feeding tube.
New Jersey recently took a step forward in empowering residents to outline their wishes at the end of life. This February, The New Jersey Hospital Association (NJHA), along with the Department, released the Practitioners Orders for Life-Sustaining Treatment (POLST) form which helps patients with a life-limiting illness, in collaboration with their health care provider, to identify goals of care and preferences for treatment. A POLST form, which is signed by a patient's attending physician or advanced practice nurse, provides instructions for health care personnel to follow for a range of life-sustaining treatments such as feeding tubes, ventilators and medication. The POLST form is designed to document end-of-life care preferences of those who have a terminal illness or a compromised medical condition.
While POLST is focused on residents who are facing a life-limiting illness, Advance Directives can be used by individuals in any stage of life. Advance Directives are an important tool to document preferences for care in a situation where an individual can no longer communicate.
In New Jersey, there are two kinds of advance planning documents that allow individuals to document end-of- life care preferences. A "proxy directive" and an "instruction directive" are both legal documents that residents can complete on their own. They only go into effect if a physician has evaluated the patient and determined that the patient is unable to understand the diagnosis, treatment options or the possible benefits and harms of the treatment options.
A proxy directive, which is sometimes known as a durable power of attorney for health care, allows individuals to designate a "health care representative" to make health care decisions on their behalf should they become unable to make their own. An instruction directive, sometimes known as a living will, is a document that records an individual's values, beliefs and goals as they relate to preferences for certain medical treatments.
In addition to recording personal choices regarding care, filling out Advanced Directives and the POLST form provides residents an opportunity to discuss with their family their preferences for treatment. Having a conversation about the end of life may not be easy, but it is even more difficult to make health care decisions without knowing a loved one's wishes. The Conversation Project survey reported that 1 in 5 residents who haven't broached the subject are waiting for their loved ones to bring up the topic first. As we gather with our loved ones for the holidays, this presents an opportunity to begin to talk about preferences for care at the end of life. There are resources available to help foster discussion, for example, The Conversation Project has starter kits to guide the conversation. http://theconversationproject.org/starter-kit/intro/.
According to the Agency for Healthcare Research and Quality, patients who talked with their families or physicians about their preferences for end-of-life care had less fear and anxiety, felt they had more ability to influence and direct their medical care, believed that their physicians had a better understanding of their wishes and indicated a greater understanding and comfort level than they had before the discussion. As health care leaders in the state, we encourage all New Jersey residents-in all stages of life-to discuss their wishes for end of life treatment with their loved ones and health care providers and take the time to document these preferences so their dignity and autonomy is honored in the future.
For more information on POLST visit the New Jersey Hospital Association's website at www.njha.com/polst/. The Department of Health's website has resources available at www.nj.gov/health/advancedirective, which includes more information on the POLST, advance directive forms, educational materials, toolkits for completing an advance directive and links to web sites with additional information on hospice and palliative care.
Mary E. O'Dowd is the Commissioner of the New Jersey Department of Health
Elizabeth "Betsy" Ryan, Esq., is president and CEO of the New Jersey Hospital Association, a not-for-profit healthcare trade organization.