Palliation Specialist Urges End-of-Life Balancing Act

Abstract

It is the practitioner's responsibility to make each dying patient's passage as peaceful and painless as possible, Dr. Ira Byock told his audience at AMDA Long-Term Care Medicine – 2013. The caregiver must balance a patient's personal preferences and beliefs, potential outcomes, financial considerations, and other issues at the end of life, said the author, professor of medicine, and director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H. In a health care system that is profit-centered and disease-focused, Dr. Byock noted, care at the end of life often doesn't get the attention it deserves. “The fundamental nature of dying is only partly medical,” Dr. Byock observed. “Most fundamentally, it is personal and intensely so.” Care for people at the end of life calls for a sense of mutual responsibility and an understanding of community. Human caring includes the provision of shelter and hygiene, offering food and drink, assistance with elimination, giving company, and the alleviation of suffering, he said. The practitioner must accompany the patient on the journey to the end. This notion isn't just a “gimmick,” he said. “It's what every single human being wants.” The “best care possible” is that which is consistent with evidence-based practices, expert opinion, and consensus guidelines, he said. But Dr. Byock emphasized the importance of shared decision making. “Our patients are experts” on what matters to them as they approach death, and “we are experts in medicine.” Working together produces the best plan of care, but many misconceptions and disagreements about care may derail this conversation. For example, Dr. Byock pointed to a 2002 study that showed a variation in feeding tube use in dementia patients ranging from 4% in some states to as high as 45% in others (JAMA 2002;287:3211-12). Although there is “no evidence that people with advanced dementia or other serious illnesses are hungry as they die,” families often insist on feeding tubes, he said. “Neither the insertion of [percutaneous endoscopic gastrostomy] tubes nor timing of insertion affect survival in nursing home residents with advanced cognitive impairment.” One way to address family pressure to offer futile treatments, Dr. Byock said, is to encourage the use of Physician Orders for Life-Sustaining Treatment (POLST) forms. Also, “I want to encourage the use of hospice in nursing homes,” said Dr. Byock. Research has documented fewer hospitalizations among hospice patients in the last 6 months of life, superior pain assessment and treatment, fewer invasive treatments, less likelihood of having a feeding tube, and less use of restraints. However, he acknowledged “real challenges” to hospices taking charge of patients in nursing homes. Even clinical ethics can be a barrier to humane end-of-life care. Dr. Byock pointed to interventions such as mechanical ventilation, cardiopulmonary resuscitation, and medically administered nutrition and hydration that may be of no benefit to or even against the wish of a dying person. “I want us to think about the ethics of expansion. I want to expand the realm of imagination and think of what we might do” while still acting beneficently and in line with mutual trust between practitioner and patient. Dr. Byock talked about the importance of “loving care” at the end of life. He defined this as “interactions with a person which convey positive regard and are intended to alleviate distress, improve comfort, evoke pleasure, promote meaningful connections, or otherwise foster well-being.” Loving care might include massage or Reiki, storytelling and life review, music, prayer, meditation, companionship, eating, aesthetic grooming, play, ritual, and celebration. Practitioners can help dying patients take the opportunity to set their personal affairs in order, Dr. Byock said. This includes resolving previously strained relationships, reviewing one's life, considering meaning and purpose, and exploring spiritual and transcendent realms. This requires practitioners to make a commitment to honor the “inherent dignity of each and every human being.” Part of this involves letting people in nursing homes die in homelike environments. To allow nursing homes to be more community-like, overcoming the political and policy challenges facing health care and LTC will be more difficult. “The polarization in our country is getting in the way.” Policymakers and LTC leaders need to work on “common high ground” to ensure “adequate staffing and living wages for aide-level workers in long-term care,” Dr. Byock said. “We also need to enforce realistic training standards for physicians, nurses, and allied clinicians. And we need to eliminate the requirement to forgo disease treatments to receive hospice care.” Dr. Byock urged his audience to “take dying back.” He explained, “We need to provide leadership to help communities grow the rest of the way up. We can provide an example that the nation and the rest of civilization desperately needs.”