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Vigilance in the provision of nursing care, communication of even slight changes in the patient’s condition, and validation of the family’s decision-making increase family members’ comfort during the dying process, a recent qualitative study suggests. Other findings include the following:
Family members’ needs must be addressed during the dying process — not just during bereavement after the patient passes away, says Paul Arnstein, RN, PhD, director of MGH Cares About Pain Relief at Boston-based Massachusetts General Hospital. Arnstein is also an adjunct associate professor in the nurse practitioner program at the MGH Institute for Health Professionals.
In a recent qualitative study, researchers interviewed seven family members or friends about their needs while a loved one was receiving end-of-life care in the hospital setting.1
The motivation for the study came from a staff nurse who worked with cancer patients at the end of life. “She attended to the comfort and emotional needs of family members, and believed this made a big difference for them at a very difficult time,” says Arnstein, one of the study’s authors. Some key findings include the following:
“Daily presence of physicians and communication by nurses or physicians of even the slightest changes was essential to a loved one’s comfort and well-being,” says Arnstein.
As comfort measures intensify, so does the need for support to a dying patient’s family, notes Saurabh Khurana, MD, a palliative medicine fellow at Cleveland Clinic in Cleveland, OH. “Informing the family of the normal dying process, such as changes in respiratory rate, ability to handle secretions, and changes in level of consciousness, can assist the family in being emotionally prepared to stay with their loved one through the time of death,” says Khurana.
End-of-life care is “all about being present,” says Craig M. Klugman, PhD, professor and chair of DePaul University’s Department of Health Sciences in Chicago. “That is, simply being with the person who is dying, and to be a witness to the life that is ending.”
In terms of medicine and clinical ethics, says Klugman, it’s important to explain things “often, simply, and compassionately” to families.
Rather than going through a litany of possible interventions such as ventilators, resuscitation, intubation, antibiotics, and dialysis — Klugman starts off by asking about the patient’s values and goals of care. “Then, offer two or three choices, such as withdrawing care, maintaining current care but not elevating care if new problems arise, or providing aggressive care,” says Klugman.
Families place a high value on open and honest communication during end-of-life care, according to Jennifer S. Temel, MD, clinical director of thoracic oncology at Massachusetts General Hospital in Boston. Many want to know what to expect as the patient’s illness progresses. “It is incredibly helpful to educate families on the physical changes they should anticipate as their loved one dies,” says Temel.
Financial Disclosure: Consulting Editor Arthur R. Derse, MD, JD, Managing Editor Jill Drachenberg, Associate Managing Editor Dana Spector, and Contributing Editor Stacey Kusterbeck report no consultant, stockholder, speakers’ bureau, research, or other financial relationships with companies having ties to this field of study.