Say there was a simple change to the health care system that would reduce cost, reduce demand, increase quality of life and satisfaction, address the patient and not just the disease, improve care coordination and increase patient autonomy. This change is possible, but it requires addressing the problem that in America, we do not die in the manner we wish.
The Institute of Medicine released its report this week, 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 met, yet physicians are not trained in dealing with them.
The trends in end of life care have changed recently, though not for the better. We tend to move around a 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 and symptom management, physicians rarely refer to such services.
The goal of the report is to create a roadmap examining what steps should be taken in order to make the end of life a better experience. Among its suggestions:
- The system of care needs adjustment to provide for “higher quality, integrated, patient-centered, family-oriented, and consistently accessible around the clock” care. Palliative care can provide this, so more palliative care professionals are needed, along with more (and earlier) referrals. All medical students should receive training in palliative care.
- Increased communication between physicians and patients. At the end of life, most need assistance in making care decisions at a time they are likely surrounded by people they do not know. Thus, the report suggests that advance care planning conversations begin in the teenage 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 easily accessed from most care locations.
- A change in funding priorities. Whereas most funding to aggressive, last-ditch efforts to keep bodies functioning, health care dollars should fund 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, creating truly integrated, inter-operational records accessible in all 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 should be for real change allowing more to experience a good death.