Every person on Earth has one thing in common: We will all die.
But how we are approaching death and the process of dying is changing.
- Hospice Care in Douglas County, 843-3738, website
- Lawrence Memorial Hospital Social Service Department, 749-6149, website
- Douglas County Senior Services, 842-0543
- Douglas County AIDS Project, 843-0049, community.lawrence.com/dcap
- Douglas County Visiting Nurses Assn., 843-3738, website
- Trinity Respite Care, 842-3159
- Headquarters Counseling Center, 841-2345, hqcc.lawrence.ks.us
- Lawrence Public Library, 843-3833, website
- Kansas Home Care Assn., 841-8611
- Older Women's League, 842-1747
- ICAN Interfaith Caring Neighbors, 749-2005
- Lawrence Meals on Wheels, 842-6697
- Caregivers Support Group, 842-0543
- Douglas County AIDS Project Friends and Family Support Group, 843-0040
- Beyond Loss Support Workshops, 843-5339
- Grief Recovery Support Group, 843-5111These nonprofit organizations can provide a wealth of state-of-the-art resources to help you make informed health-care decisions for yourself and your family at the end of life:
- Finding Our Way: Living with Dying in America: Get up-to-date information on all advanced illness and end-of-life care, including links to all of the resources in this series. website
- Partnership for Caring: America's Voices for the Dying: Download forms for advance directives tailored to your state; join a consumer advocacy group focused on improving end-of-life care. website
- The Last Acts Campaign: Research latest news on legislative, educational and policy initiatives from local, state and national organizations. website
- The National Hospice and Palliative Care Organization: Search for hospice and palliative care, two types of care offering comfort and pain management at the end of life. website
- Growth House: Search this "Yahoo of Death and Dying" for comprehensive links to end-of-life care, with an emphasis on diversity. website
- The Center for Advanced Illness Coordinated Care, in collaboration with the Veteran's Administration Healthcare Network of Upstate New York at Albany: Find guidance on coping with the complexities of serious illness through the "Walking the Advanced Illness Road" section. website
- American Association of Retired Persons: Find extensive support for and information on caregiving, illness, grief, widowhood, funerals, wills and estate planning, and advance directives. website
- Aging With Dignity: Provides Five Wishes, a planning document. website
- Center to Advance Palliative Care: Search the latest resources in palliative care available to hospitals and health-care systems. website
- Missoula Demonstration Project: Research tool for communities interested in setting up models for improved care at the end of life. website
- Community-State Partnerships to Improve End-of-Life Care (funded by the Robert Wood Johnson Foundation): Find out what individual states are doing to organize health-care professionals, educators and policymakers. website
- Project on Death in America: Lists innovations in the arts, social work, education and public policy. website
- Promoting Excellence in End-of-Life Care: Research programs that have received grants and technical support for innovative ways to change the face of dying in America. website
- Americans for Better Care of the Dying: Track changes in public policy, as well as reforms in pain management and support for family caregivers. website
After pushing for everything from natural childbirth in the 1960s to longer, healthier lives in the decades since, 76 million baby boomers are now demanding information, guidance and relief in what will be their ultimate transition moving from advanced illness into dying.
A generation that grew up listening to the Rolling Stones and Led Zeppelin expects innovative products to help relieve severe pain at the end of life. And in a cultural change, Americans are revisiting the way they think about death.
"In the 40s is the time when people start to reassess themselves," said Richard Schiefelbusch, Kansas University professor emeritus of speech, language and hearing. "They are not threatened by their career and they begin to mature. People fear death. The closer they get to it, the more uneasy they are."
But while they may be uneasy, they are more willing than ever to talk about it.
Committees, like the Lawrence Caring Community Council and the state's LIFE Project, are bringing end-of-life issues to the forefront and giving others permission to talk about a subject often discussed only in hushed tones or not discussed at all.
"A lot of people are on the same wavelength," said Emily Taylor, chairwoman of the Lawrence Caring Community Council and former dean of women at KU. "We are trying to get the national dialogue down to the local level."
Looking to the future
According to Dr. Dan Tobin, co-director of the Palliative Care Program at VA Healthcare Network in Albany, N.Y., a new end-of-life landscape looms before us. At its foundation are these tenets:
- Pain management will become a touchstone of medical planning, ensuring that no one will die in pain. That is an idea that Taylor and Schiefelbusch firmly embrace.
"Our standards are so low, and we don't know what to demand," Taylor said.
For example, she said, a survey of those who recently lost loved ones indicated that 85 percent of them thought their loved ones were in moderate or extreme pain at the end of the lives. Eighty percent of those respondents also said they were satisfied with the care the patient had received.
In addition to being pain-free physically, Schiefelbusch wants those dying to be stable emotionally.
"Many people live in pain and loneliness, and it's got to be changed," Schiefelbusch said. "They live in conflict and guilt, and they need to be counseled."
- A new vocabulary will evolve that addresses patients' spiritual needs and honors their cultural traditions.
- New job descriptions will emerge for nurses and social workers as care coordinators who guide people through the health-care delivery system.
- From the grass roots will grow an extensive community network to support caregiving to ailing parents and demand reforms in insurance coverage and local and state laws.
- Current research funded by foundations will bear fruit by changing the way hospitals and major medical organizations are accredited and deliver care.
- As more patients use hospice and palliative care for longer amounts of time, they will become household words.
- More people will know about end-of-life legal considerations, such as giving someone the power of attorney so their final wishes will be carried out rather than disregarded.
"They must pick an agent, or power of attorney," Taylor said. "As long as you can speak for yourself, you're OK. But if you're in an accident and in a coma, or if you're demented, you'll need someone to (act on your behalf)."
Final acts of kindness
Schiefelbusch became fascinated with the subject of aging about the time he retired from his duties at KU. The more he read about death and dying, the more he realized the need for a greater understanding of the process.
"Dying has a positive side," he said. "It's a challenge for the participant. There's a legacy to be left for family and friends, and people need to understand their role."
Oftentimes, a person who is dying feels sorry for themselves and seeks sympathy.
"That's natural perhaps, but it's not productive and troubles other people," he said. "What's most important is to realize the good things in their life and to consider if there's still a few things they want to do to help someone else. There's healing in giving. Even if they are terminally ill, there's still time to do thoughtful things and to be helpful."
Schiefelbusch said that notion is demonstrated by his own parents' final words: His father told him, "I've had a wonderful life." In contrast, his mother said, "Thank you. You are a compassionate man."