Dying: Real and Imagined Perspectives (Research, Video 3:19)

Even though most people say they dread dying, the good news is that the reality of dying isn’t so bad after all. Many people imagine that dying is worse than it is in reality. This became apparent in two death research studies comparing the affective experience of people facing imminent death with that of people imagining imminent death.

The first study revealed that blog posts of near-death patients with cancer and amyotrophic lateral sclerosis were more positive and less negative than the simulated blog posts of non-patients. Also, the patients' blog posts became more positive as death neared. The second study revealed that the last words of death-row inmates were more positive and less negative than the simulated last words of non-inmates. The last words of these studies suggest that the experience of dying, even from terminal illness or execution, may be more pleasant than one imagines.

Why are some people so afraid of death? Dr. Ira Byock, a leading palliative care physician, author, and public advocate for improving care through the end of life, thinks it's partly a human thing that has become more exaggerated during the last century. The American way of dying has gradually become dying in the hospital, maybe in the intensive care unit. Many Americans are dying tethered to machines. Dr. Byock emphasizes the best care possible in a way that is not always seeking to prolong life.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Dying in Hospitals: Family Experiences (Research, Video 3:34)

Many people still believe that most people die at home. That’s a comforting thought for them knowing that loved ones are more in control of matters such as who comes and goes, when and why they do that. Most of all, they appreciate being able to have more emphasis on non-medical dying needs. But the reality is that most people die in hospitals and nursing homes. While recent literature has focused more on the needs of caregivers in the home setting, it is important to recognize needs of family members caring for patients with advanced illness where they serve as the key intermediaries and decision makers in inpatient settings such as hospitals.

Focus groups consisting of dying hospital patients' family members can help identify the quality of their experiences. Groups involved in this research had participants aged 46-83, all female, mostly Caucasian and African American. The results of four such groups followed by interviews revealed the following eight domains about the quality of family experiences of dying hospital patients:

1.    Life completion

2.    Symptom impact

3.    Decision making

4.    Preparation for crisis and death

5.    Relationship with healthcare providers

6.    Affirmation of the whole person

7.    Post-death care

8.    Supportive services

Findings suggest the importance of good communications and relationships in meeting the clinical needs of family members. The development of more methods to assist families with the tasks involved with life completion, being prepared for a crisis and imminent death, and post-death care are needed.

Dr. Ira Byock, palliative care physician and chief medical officer of the Providence Institute for Human Caring believes that the fundamental nature of dying is not medical. It's personal. Dying cannot be encompassed only by a set of medical problems and a set of diagnosis and treatments. In this video, he explains his perspective on dying in a hospital.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Ethics of Dying (Video 2:18)

People don’t die like they used to die. They live longer with illnesses that progress while technology keeps them alive. Questions are asked about taking the technology too far or not far enough. Family members argue about extending loved ones’ lives as the inevitable approaches. Some question if the burdens of dying are worth the benefits from extending life. Can death be wrestled to the ground and lose to earthly inventions? What about cost factors, legalities, and societal impacts?

As the population ages, there will be a 50% increase in cancer cases over the next 20 years. With more and more technical advances, older adults with advanced cancer, their caregivers, and healthcare providers are confronted with circumstances in which medical advances may inadvertently extend dying and suffering rather than bring healing.

Spirituality often comes up during these times, and assistance from members of the healthcare team may be needed to resolve important ethical concerns. Spiritualty and religion can play significant roles in oncology and in survivorship. Many patients and caregivers rely on them when choosing therapies and aggressive or less aggressive end-of-life care.

Palliative care includes many ethical issues. Is there an ethical limit to prolonging life? In this video, Dr. Ira Byock, palliative care physician and chief medical officer of the Providence Institute for Human Caring, addresses the ethics of prolonging life:

Health care blogs like mine and health care websites can be persuasive. They are used by many to impact the thoughts and actions of others. Is one more persuasive than the other? Here’s what the research says: https://www.linkedin.com/pulse/health-blogs-vs-websites-frances-shani-parker?trk=mp-reader-card

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog