For the 2016 survey, FCA of CT wrote to the 300 Connecticut funeral homes and cremation services requesting their current price lists. As in previous surveys, we then turned to volunteers to contact those funeral establishments that did not respond. The trustees decided to survey some counties in depth and to sample other areas. Members can get the full survey, a summary is available here.
Saying goodbye forever is always difficult both for the voyager and for those who stay. But worse still is leaving with no communication. I have always appreciated the good friends who let me know of their serious diagnosis or their move to hospice, and for the chance to exchange loving reminiscences, thoughts, and adieus. Often, when that is not possible, things are left unsaid with a poignant emptiness.
So I was particularly interested in a recent article by VJ Periyakoil, a geriatric and palliative care doctor, who has developed a format for thinking through and writing farewell letters. The idea grew out of the treatment of a stoic, silent patient with terminal cancer who was unable to discuss his feelings with family but could with the doctor. Together, they recorded a letter which expressed his loving memories and pride for his family. When his wife and son heard the taped letter, they were amazed and moved to tears.
This experience was very comforting for both the patient and the family. It led to a project to encourage patients to put their often unexpressed feelings into words and to write letters to important family members and friends which acknowledge their importance in one’s life, recall treasured moments, apologize for possible hurts, forgive those who had been hurtful, and say good-by with love. The project created, tested and revised templates for these last letters, expanded the audience from terminal patients to sick ones and then, since death is often unexpected, to healthy people. Currently, free templates for those with serious illness and those in good health are available in eight languages; along with instructions, examples and videos they are available on line. The mechanical process is relatively simple since the templates can be filled out, revised, and printed easily from one’s computer.
Some may find a farewell letter template overly rigid, but it need not be followed exactly; innovation and personalization are encouraged and people should include only with what they are comfortable. Some find the template is too simplistic for complex, sensitive feelings but it offers an important starting point and wide map of issues to consider. To those who feel a template and a review of memories is unnecessary since a farewell letter is intuitive and natural, the only question one might ask is “have you written your messages yet?”
It is not always easy to carve out a letter of love; it takes time, thought, and sometimes courage to review and express emotional bonds, but it can be a healing summary for the writer and a loving legacy for the reader.
(Go to med.standfor.edu/letter to review the suggested process, obtain the template, and write your letters.)
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.