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.
by Patricia Carr
On September first, 2013, my father, age 100, died in Yeovil, Somerset, a pretty county town where he and my mother had lived for close on thirty years until my mother died in 2005. Both parents had opted for cremation, and on each occasion it was conducted by a funeral home at the local crematorium. Unlike the United States, where the service is separate from the cremation, in both time and place, in England the service and initial phase of cremation are combined.
The crematorium, surrounded by a beautiful garden of flowers, shrubs and trees, has its own inter-denominational chapel, a modern, light-filled space holding perhaps 60 people comfortably. There is a courtyard in front, filled with flowers, and a covered way leads from the driveway to the door of the chapel. There is also a room adjacent to the chapel so that people can gather before and after the ceremony inside or out, depending on the weather. My mother died in February, my father in September, so we saw this location in winter and in summer.
The people at the funeral home couldn't have been nicer or more helpful in a kindly and discreet way. We were asked what sort of service we wanted, which hymns (if any) and if there was any particular music we would like played during the interval when curtains at the side of altar open, and the coffin automatically glides on its short journey, the curtains closing before it reaches its destination. For my father, as we had for my mother, we had chosen a magnificent arrangement of flowers to be placed on top of the coffin for the service. After the curtains had closed, these were removed by people from the funeral home and put in several smaller vases which were taken to the local hospice to decorate the patients’ rooms.
My mother had been very fond of Gilbert & Sullivan operas, and so the organist played a (not too rousing!) selection of tunes from those very popular operas. My father, on the other hand, used to drift around the house, especially in the morning when he was getting ready for the day, humming Debussy’s popular “Girl with the Flaxen Hair”, a very wistful sounding piece, which was perfect for the occasion.
After the service, we all went over to the Airport Tavern close by—so-called because Yeovil is home to a large Royal Navy/Fleet Air Arm station, where a wonderful buffet of hors d’oeuvres was spread out for everyone. I suspect this tavern makes as much money from the crematorium next door as it does from the military base!
A stone already existed in the garden with my mother’s name and dates on it and with space left for my father’s name and dates, to be added.
In 1969 the number of cremations exceeded those of burials and currently the proportion of cremations to burials is about 75%. For more information about the U.K. death-style, google “Burials versus Cremations U.K.” and log onto the site for Lancaster, U.K. and “Frequently asked Questions".
Is embalming required?
NO. It is not required for either cremation or for burial. Funeral homes may have “policies” requiring embalming for viewings or funerals with the body present, but there are no laws requiring this. Funeral homes may urge embalming if burial is delayed, but refrigeration is a viable alternative. Cremation and Immediate Burial are two choices funeral homes must provide without embalming.
What are the requirements for caskets & vaults and what are good choices?
NO government requirements. Cemeteries often require an outer container to make grounds care easy.
NO casket or vault preserves and protects the deceased; body deterioration and earth seepage are inevitable.
Choices depend on philosophy, finances and taste. Many prefer the simplest, most environmentally friendly, and least costly options.
Can’t most of us make our own decisions on health care as we near the end of life?
NO. At that stage, physical, mental or cognitive issues make these decisions very difficult. Information, thoughtful planning, periodic conversations with kin and doctors, updated Advanced Directives, and an advocate are essential.
What printed material must a funeral home or cremation service provide?
PRICES, PRICES, PRICES. Visitors must receive a printed General Price List of all goods and services offered and printed prices of caskets, alternate containers, vaults and grave liners