‘New Grief’ guides long-term terminally ill patients


Posted on January 30, 2012

It’s been nearly a half-century since Elisabeth Kubler-Ross wrote the landmark book “On Death and Dying.” Her five stages of grief – denial, anger, bargaining, depression, acceptance – remain fundamental in society still today.

A cancer diagnosis in 2012, however, has a far different outlook than in 1970. Psychologists Barbara Okun, Ph.D., and Joseph Nowinski, Ph.D., update Kubler-Ross’s work and help families and the terminally ill in their new book “Saying Goodbye: How Families Can Find Renewal Through Loss.”

Advances in treatment and diagnosis have dramatically changed the outlook on death, as Professor Nowinski shares: “Modern medicine has created a unique situation — one in which the patient and his/her family are drawn into a protracted process that only begins with a diagnosis. This process, which typically goes on for years, not weeks or months, can include a complex treatment process, potential remission, and potential relapse.”

The co-authors learned from families and patients alike that they feel “cast into the black hole of the modern high-tech but fragmented medical system,” which further triggered anxiety, depression, and confusion.

Responding to the lack of advice and resources, other than “the doctor of the day,” the authors offer a roadmap to help explore what to expect.

Published by Harvard Health Publications, the book covers the emotional toll on the patients, caregivers, and loved ones and provides suggestions such as forming support groups.  The authors dive into details, such as how to be persistent in seeking second opinions and offering suggested questions for specialists.

While many cancer patients may be seeing surgeons and radiologists, there needs to be a “chain of command” of the medical teams along with a “family chain of command.” In this case, the authors say, an oncologist may be the best person to head the chain of command.

Another set of recommendations relates to patient discharges. Today’s patients are discharged, even after major surgery, in a less healed state, often requiring home health visits from nurses and other medical professionals. The authors strongly encourage families to accept as much support as their insurance will provide, warning of burnout and lack of skilled medical knowledge in the average family, not to mention the additional stress.

Between the practicalities, the authors share touching stories of those who are or have lived through this difficult time, including themselves.

Published in 2011, “Saying Goodbye: How Families Can Find Renewal Through Loss” offers answers where medicine and modern life have yet to advance.

Read the full article from our January Newsletter here.

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