“Don’t worry so much, everything will be fine.”
“You have other things to worry about. There’s nothing we can do, anyway.”
Do these statements sound familiar? When you’re concerned for a family member nearing the end of life, you may sometimes feel your concerns are dismissed by others. Or, perhaps it seems others in your family are more concerned than you are. What is normal?
I recently ran across an interesting study published in the Journal of the American Medical Association a few years ago, which explored the types of concerns families had about the care provided to their loved ones as they neared death. The results showed that nearly half of family members expressed concerns about some aspects of the care delivered to a deceased relative at the end of life. The issue causing the greatest concern was inadequate emotional support for the patient and family.
The study also revealed that family members generally had fewest concerns for patients who died under hospice care. Family members of patients who died under hospice care were less likely to report concerns than were family members of patients who died with other care arrangements.
To those of us intimately familiar with hospice care, these results are not surprising. In fact, we think they are directly connected to the comprehensive care hospice provides, not only to the patient, but also to the family.
The hospice care team is interdisciplinary, and provides emotional support to the patient and family in a variety of ways. Social workers are available to help manage any stress the patient or family may be feeling, and they are knowledgeable in the emotional aspects of end-of-life care. Chaplains provide support by meeting the spiritual needs of patients and families going through end-of-life experiences. They can also provide a much-needed “link” to a patient’s faith community.
Following a patient’s death, care for family members continues with grief support. Hospice bereavement counselors help family members validate their feelings of loss and offer practical suggestions through individual support, or derive a sense of shared experience through a support group.
Concerns about quality of care differ from family to family, and from individual to individual. While there is no “right” level of concern, the most important thing is to address your individual needs and concerns with your loved one’s care team.
If you’re a caregiver, or may become one someday, what concerns do you have? Please share your thoughts and comments with us.
About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email firstname.lastname@example.org or visit www.hrrv.org.
 Teno, J. M., B. R. Clarridge, V. Casey et al. 2004. Family Perspectives on End-of-Life Care at the Last Place of Care. Journal of the American Medical Association 291 (1): 88–93.