Terminal illness is a diagnosis that sends dreams and plans for the future into a tailspin. Regardless if the patient is elderly or in the prime of life, this news changes everything for them and their family from that point on. “Grief is an ongoing process, not a one-time event,” and this quote from Saying Goodbye illustrates clearly the essence of the book. The result of a collaboration between Barbara Okun, Ph.D. and Joseph Nowinski, Ph.D., their many years of experience as family therapists serve the book’s purpose well in helping families come to terms with what is, what shall be, and what will likely happen in the interim. The family of the terminally ill person is brought into their loved one’s new reality to address the finality of the diagnosis and all that it entails.
Elisabeth Kübler-Ross, author of On Death and Dying, published in 1969, identified five stages of grief: denial, anger, bargaining, depression, and acceptance. Okun and Nowinski associate those stages with “traditional grief.” However, because of modern medicine’s increasing ability to prolong life in the face of impending death, a “new grief” has been born as the terminally ill and their families are now living with death for longer periods of time. In what the authors refer to as a template or road map, Saying Goodbye leads these families through five stages of the new grief: crisis, unity, upheaval, resolution, and renewal. They believe that while there will be “no hard-and-fast boundaries separating these stages,” it is likely you will be “dealing with issues associated with more than one stage at any given time.”
Beginning with the diagnosis of a terminal illness, what is then experienced is largely dependent on how the patient responds to the diagnosis, family members’ relationship to that person, and the roles each family member has assumed in the past and may in fact still play. Family dynamics is the evidentiary thread of continuity in Saying Goodbye as to how well the diagnosis is or is not dealt with, and how positions of responsibility within the family for different aspects of the ill person’s healthcare and legal matters are decided and managed. If healthcare directives and legal documentation such as DNRs (do not resuscitate), powers of attorney, etc., are not already in place, families can find themselves in a highly emotional environment that is not conducive to making decisions clearly.
Life has meaning. Crises are normal. Crises create opportunities. We can survive. Death has meaning. In a chapter on resiliency, these attitudes are indicative of a resilient family, one that may be better equipped to face the challenges that come with a terminal illness. A fragile family, in contrast, may find it difficult to even consider them to be something in which strength can be found. While certainly beneficial to both kinds of families, it seems that Saying Goodbye may be most helpful to those whose delicate family dynamics might hinder or even prohibit sound decision-making.
Because they are based on personal experiences, what may be an especially invaluable resource for families are the many stories of individuals that are shared throughout the book. In some cases, very specific personal reflections on what they wish they had known or done are also presented and may be the most telling of what a family member goes through. These perspectives both from patients and family members may cause readers to reflect on their own situations as they pertain to quality and end-of-life plans. If you have not already done so, you may even find yourself thinking very seriously about addressing these things now while failing health is not an issue. Owing in part to the family therapy approach of Saying Goodbye, there is a great deal of information contained within its pages that can help to bring families closer on numerous levels and perhaps help them communicate more effectively regardless of whether a terminal illness is involved.
The end of the book provides several pages of websites for coping with the issues surrounding terminal illness and include general topics, grief and support, hospice, funerals, medical issues, specific diseases, counseling and therapy, services for veterans, and legal issues. Although there will be many times when research and reading may not be on a family’s priority list of things to do, those to whom the diagnosis of a terminal illness has been delivered may want to invest in copies of this book as one of the first resources they can access for insight and direction. Better yet, the physician who shoulders the unenviable task of delivering that news may want to do so with a copy of Saying Goodbye in hand, thereby providing the family with a head start in navigating the family, medical, and legal twists and turns they will inevitably encounter.
Saying Goodbye: How Families Can Find Renewal Through Loss