by Craig Klugman, Ph.D.

Say there was a simple change that could be made to the health care system that would reduce cost, reduce demand, increase patient’s quality of life and satisfaction, address the whole patient and not just the disease, improve care coordination, and increase patient autonomy. All of this is possible, but it requires addressing the problem that in America we do not die as we want to.

This week the Institute of Medicine released its latest report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Despite decades of efforts, the report shows that there has not been much change in how we die. We mostly want to die at home and yet we die in hospitals. We mostly want comfort care and yet we mostly receive aggressive care. We want our emotional and spiritual needs attended to, yet physicians are not trained in dealing with those needs.

The trends in end-of-life have changed recently, though not for the better. We tend to move around lot at the end, between home, long term care facility and hospital. More technical caregiving is done by family members. Although palliative care leads to a “higher quality of life, including better understanding and communication, access to home care, emotion and spiritual support, well being and dignity” and symptom management, physician rarely refer to such services.

The goal of the report is to create a roadmap that looks at what steps should be taken in order to make the end-of-life a better experience. Among their suggestions

• The system of care needs adjustment to provide for “higher quality, integrate, patient-center, family-oriented, and consistently accessible around the clock.” Palliative care is capable of providing this experience so there need to be more palliative care professionals and more (and earlier) referrals. This will also require training all medical students in palliative care
• Increased communication between physicians and patients. At the end of life, most people need assistance with making care decisions at a time they are most likely to be surrounded by people they do not know. Thus, the report suggests that advance care planning conversations begin in the teen years and continue throughout life. These chats should address not only desired care and values, but also spiritual and emotional needs. People should receive assistance in completing advance directives. Health care providers should document these conversations not only in the physician’s office but also in medical records that can be easily accessed from most care locations.
• A change in funding priorities. Whereas the most funding goes for aggressive, last ditch efforts to keep bodies functioning, health care dollars should go toward funding coordination of care, palliative care-like programs, and physician time for conversing on end-of-life issues. There should be additional fund for POLST programs in all states and creating truly integrated, inter-operational records accessible in all care settings.
• Lastly, the report recommends improved and increased public education and engagement to “raise awareness and elevate expectations about care options, the needs of caregivers and the hallmarks of high-quality care” as well as to complete advance care planning conversations and documents.

Ever since Elisabeth Kübler-Ross inconveniently pointed out that Americans have an avoidance problem with death, efforts have been taken to improve care for the dying. As this report shows, those efforts are noble and innovative, but not nearly as endemic as they need to be for real change that allows more people to have a good death.