by Charlene Thurston,RN,ANP,Hospice Director,from the Fall 2000 Hospice Currents Newsletter
How would you want to live well at the end of your life? What does “on your own terms” mean to you? These are question which we considered as we, along with other hospices across the nation, watched the recent 4 part PBS series, “On Our Own Terms: Moyers on Dying,” and followed it with a community forum.
By filming and interviewing real people, who generously allowed the cameras into their lives as they experienced the struggles, decisions, and rewards that the end stage of life brings forth, this excellent Moyers series afforded the public an unusual opportunity to witness and learn about the various issues which can arise, and the options for treatment which exist. It also gave the public an opportunity to see how hospices and palliative care programs remain steadfastly focused on providing comfort, guidance, and support which enhance the dignity and quality of life of patients and their families. The importance of family discussions, the value of the family doctor, and the wisdom of advance care-planning were emphasized throughout the series as the means through which one’s values and choices can be respected as decisions about treatments must be made.
In hosting the follow-up community forum in Nantucket, our goals were twofold: to help people reflect on their own values and to think about what would constitute a “good death” for them; and, to have people think about the needs and services in our own community and identify any gaps in services and opportunities for improvement which might exist. Approximately fifty people gathered to participate in this two-hour discussion and a very worthwhile exchange of ideas took place.
As thoughts were shared about what elements would be important for a “good death,” the following were mentioned: to be free of pain, breathlessness, and other distressing symptoms; to be surrounded by love and loved ones; to be treated with respect, including respect for our cultural differences; to have our clergy and members of our faith community available and our spiritual needs attended to; to have health care professionals who are compassionate, sensitive, and skillful in palliative care and who advocate for their patients and their families; to have a healthcare system that communicates with and guides its patients and families, informs them of options, respects their decisions, addresses their fears, and honors their health care proxies and advance directives.
Other things which people felt would be helpful in our community included: more education about the availability of good pain management; education about advance care planning and communication; repeated forums, such as this one, for other groups who might benefit; music therapy; local media coverage of services available on the island, including television broadcasts of community members who’ve used various services; education of employers about needs of employees in grief; education for children about death and dying; having easy access to a rabbi throughout the year for members of the Jewish faith; education about the role of a health care proxy and the importance of keeping one’s health care proxy informed of our wishes, as time goes on; increased support and help for family caregivers; volunteer assistants to help surviving spouses with processing legal and medical affairs after a death; closer connection with family physicians through home visits during the last days.
As further follow-up for the public, we will have speakers available to help individuals, families, or groups learn more about the process of advance care planning. We also have available several videos which may be helpful and which may be borrowed from our office: “On Our Own Terms: Moyers on Dying;” “Five Wishes;” “ABC’S Tuesdays with Morrie;” For a packet of resource information, including the “Five Wishes” advance directive document, you may call 1-800-962-2973.