Creating a conversation about the end of life
By: Carla Axtman
July 1, 2009 — Serious illness, death and dying are often difficult subjects to talk about. However, a lack of communication among individuals, families and health care professionals on these matters often leads to distress for both patients and their families.
As individuals approach the end of their lives, more should be done to facilitate communication with patients and their healthcare providers. These discussions are critical for patients to learn and understand all their treatment options. In addition, physicians and other healthcare providers can learn and understand what their patients want for themselves in terms of the care they want or do not want to receive.
The Physician Order for Life Sustaining Treatment (POLST) is one way to get these conversations started. POLST forms allow patients to document with their physician their end-of-life treatment wishes. A decade of research has demonstrated that orders for life-sustaining treatment effectively convey treatment preferences and guide medical personnel to provide or withhold interventions. These orders contain the individual’s treatment decisions, signed by a physician, and follow the patient through all end-of-life healthcare settings. Without these medical orders, emergency medical personnel may be required to provide treatments that aren’t consistent with the individual’s preferences.
Compassion & Choices is the nation’s leading nonprofit organization working to improve care and expand choice at the end of life. C&C strongly believes that health care should focus on the needs and desires of the patient. A patient-centered system is not only fiscally responsible, but it also empowers the patient to control his or her own healthcare. It is the patient’s right and responsibility to determine the healthcare they want that’s in line with their values and beliefs.
Currently, only half of terminally ill patients have conversations with their physicians regarding end-of-life treatment choices such as hospice care or other end-of-life care preferences. Americans tend to put off having these conversations on death and dying. As a result there is often a lack of planning for care at the end of life. If a health crisis then occurs, the patient can be subjected to unwanted, futile and often painful medical procedures. This kind of care doesn’t necessarily reflect the individual’s values, beliefs or informed choices but is a “default” approach that kicks in when patient’s wishes are unclear.
Dying individuals have the right to decide whether to stay in the acute care system or to enter hospice. The acute care system continues to aggressively treat patients up to the end of life, even with side effects that may shorten or weaken that life. When death arrives, heroic measures are used in an attempt to wrest them back to life.
In the hospice system, pain and anxiety are managed. Appetite stimulants are given if needed. Patients receive the food and fluids that they enjoy and that their body can manage. Treatments and medications with difficult side effects that they can’t stand and won’t save their life are withdrawn. Ironically, this type of care is the most likely to prolong a patient’s life and improve the quality. In hospice care, individuals can have a peaceful death without the trauma of heroic measures.
A study of 323 cancer patients who had died found that those who had end-of-life talks were three times less likely to spend their final weeks in intensive care. These patients were also four times less likely to be on breathing machines and six times less likely to be resuscitated. The study found that aggressive care is associated with a worsened patient quality of life and a more difficult bereavement adjustment.
Billions of dollars are spent each year in the U.S. on intensive treatment for older patients in the last six months of life. Terminally ill patients who talk with their doctors about end-of-life treatments can extend and improve their quality of life without extravagant expense while achieving a more peaceful death. Patients who have the discussion tend to opt for palliative care in a hospice or at home rather than aggressive and expensive treatments like emergency resuscitation, ventilators and intensive care units.
Patients deserve to know their end-of-life treatment options. Making informed choices is the key to a peaceful and dignified death. POLST conversations are one of the most effective ways to facilitate these discussions both with physicians and with family.
Carla Axtman is the online community builder for Compassion & Choices