Two recent, distinctly different publications address end-of-life concerns and despite different audiences, format, and approaches, both focus of important considerations and share a common theme. End-of-life goals should emphasize quality rather than quantity of time, should be considered at all stages of life, since death can occur at any age, and should help patients to be pain free, related, engaged and participatory. The subtitles reflect the common theme.
Dying America: Improving Quality and Honoring Individual Preferences near the End of Life is aconsensus committee reportfrom the Institute of Medicine (IOM), part of the National Academy of Medicine. Written primarily for doctors, nurses, social workers, clergy, and health support staff, it also has recommendations for educators, policy makers, and insurance systems. The aim is “to ensure that end-of-life care is compassionate, affordable, sustainable, and of the best quality possible”. Recommendations include: person centered, family oriented care; a palliative treatment and hospice focus; better clinician-patient communication on Advanced Care planning;, professional education changes to foster palliative knowledge, communication skills and interdisciplinary team work; payment and insurance reforms to decrease incentives for unneeded tests, medication, and procedures.
Being Mortal: Medicine and What Matters in the End by Atul Gawande, a surgeon, is a short, moving book for the general public; it includes both research and vignettes of experts who have revitalized nursing homes, patients and family members who struggle with difficult choices, and his own experiences encountering end-of-life issues. The book underscores the theme that medicine is not just to ensure health and survival but to enable well-being. Palliative care is deemed an important option in promoting quality of life and honest communication between doctor and patient is essential. Questions include: “What is your understanding of the situation and the potential outcomes? What are your fears and hopes? What trade-offs are you willing to make, not willing to make? What course of action is best?”
Charges of ‘death panels’, ‘rationing’, ‘saving money and losing lives’ will be leveled at Dr. Gawande and especially at the IOM are bogus; both publications stress the following the informed wishes of the patient, which depend on careful conversations throughout a person’s life and during the different stages of illness.
Both the report and the book are optimistic that the health care professions will move forward to emphasize the option of palliative care, that reforms will occur and that comprehensive services will be adequate. But, the needed changes will take time. Meanwhile, it is imperative that informed consumers take the initiative on their own: Give careful consideration to the Advanced Directives. Fill them out. Discuss them with your family and doctor. And, equally important: Choose an advocate who knows your philosophy and wishes, can help you think through revisions, and will advocate for you with clarity and skill.