Death is a part of life and yet it is a topic most of us are unwilling to think about let alone discuss with our loved ones. This complicates matters when the inevitable happens and individuals and their families suddenly find themselves no longer in a position to have a discussion about their loved one’s wishes for the type and extent of medical care.
According to Gallup polls, 90% of respondents would prefer to be cared for in their home if they were diagnosed with a terminal illness and had less than six months to live. Yet, 80% of Americans die in either a hospital or a nursing home. Some patients say they want to have everything done to keep them alive – regardless of the resulting quality of life. Others may opt for palliative care which focuses on keeping the patient comfortable.
When preferences are not known and communicated in advance, health care providers tend to protect themselves by providing more aggressive and invasive treatments. This can lead to care that is not only unwanted, ineffective and potentially painful, but very costly.
According to the Commonwealth Fund, more terminally ill patients are living longer and many states, community-based coalitions and health care providers have begun to focus on the quality of the medical care provided at the end of life. Several states have launched initiatives focused on improved communication between doctors and patients about prognosis and treatments. New York has gone a step further requiring physicians to discuss palliative care and end-of-life options with terminally ill patients. Today, most states have in place or are developing programs to support the use of Physician Orders for Life-Sustaining Treatment (POLST), a standardized medical form that specifies the types of life-sustaining treatments that a patient does or does not want.
These efforts have helped curtail the use of medical interventions that are not in accord with patients’ wishes or offer little benefit and ensure patients are aware of the range of hospice and palliative care options. Yet there remain significant gaps between the end-of-life care most Americans say they want and the treatments they receive.
Part of the reason efforts to improve end-of-life care have not gained wider traction is that providers are often ill-equipped to deal with the confusion, distress, anger or other emotions that accompany discussions about illness and death. Taking cues from patients or their family members, they may accede to what's been called a "dance of denial" about a poor prognosis, until an emergency situation, such as a need for mechanical ventilation, brings the issue to the forefront.
Most Americans say they’d
prefer to die at home but
70% to 80% die in hospitals
or other institutions.
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