Death & dying are not common topics of family conversation in American culture. Even when a loved one is critically ill, many families struggle with how and when to share their thoughts and feelings about death and dying with each other.
Hospice workers are in a unique position to interact with families as the process of dying is experienced. I recently spoke with staff members from a couple of local hospice agencies who offered insight and perspective related to individual and family responses to death and dying.
One response which these professionals regularly encounter is a request by the family to not tell the patient that he/she is dying. Sometimes it’s the patient asking the professional to not tell the family that he/she is dying. The professional is asked to not wear a name badge which might say “hospice” on it, and not to introduce himself/herself as from a hospice organization.
Families may react in this manner for several reasons:
- Fear that their loved one will respond to the news by “giving up”
- Personal difficulty accepting the circumstances and a “if we don’t talk about it then it isn’t real” belief
- Lack of time or energy to have emotionally intense discussions due to the pressures of physical caregiving, financial concerns, job responsibilities, etc.
- A desire to avoid an appearance of weakness or vulnerability
Although family members may believe they are protecting their loved ones from emotional stress by not talking about death, avoiding these conversations may actually create additional heartache for everyone due to an inability to pursue individual goals for care and experience closure. Even when families tried to hide the fact, in the majority of cases experienced by these hospice workers, their patients who were alert and oriented were aware that they were dying.
One nurse I spoke with identified what she referred to as “the tasks of dying.” When people are aware that the end of life is approaching, their emotional and spiritual focus may change and certain activities may have greater importance, such as:
- Apologizing for past mistakes
- Forgiving others for uncomfortable situations/relationships
- Thanking family members, friends, and others who are significant
- Sharing love
- Saying “Goodbye”
The significance of these tasks was acutely demonstrated by one couple who were receiving services from this nurse. The wife was at the very end of her life, in fact, her physicians could not understand why she had not died days beforehand. Initially, the hospice team believed she was waiting for their daughter to arrive, however, she continued to cling to life despite the daughter’s presence. The hospice nurse finally asked the husband if he was aware of any unresolved issue for his wife, and he immediately broke down. Many years prior, he had an affair. His wife knew of the affair and they remained married, but they never spoke about it, moving forward as if it had never occurred. With encouragement from the nurse, he acknowledged this situation and requested forgiveness from his wife, and she died within 20 minutes.
How does one initiate conversations about closure and end of life goals for care? For families who are reluctant to tell a loved one that he/she is dying, a question which might be helpful is “What is the worst case scenario if you tell your loved one?”
When speaking with the individual who is dying, recognize that one important concept for those who are near the end of life is legacy. People want to know that their lives mattered. Asking “What are you most proud of?” or sharing an accomplishment of the individual which made an impression on you can open the door to deeper dialogue.
For questions which can help guide the development of goals for care, consideration should be given to not only specific medical treatments, but how those medical treatments will influence daily life. Defining values with questions such as “What is a good death?” and “Is there something that you want to accomplish?” can help guide care decisions. For additional reading on this topic visit: https://online.nursing.georgetown.edu/blog/talking-about-end-of-life-care/.
Karen Kaslow, RN, BSN
Sincere thanks to the staff members of Hospice of Central Pennsylvania (717-241-0014) and AseraCare (888-273-0935) who shared their insights and experiences for this article.