The World War II veteran, now in his 90s and receiving hospice for end-of-life care, was playing military anthems on his harmonica for fellow veterans. But the next minute, reliving the horrors of combat, he grew agitated and started to cry. “Oh, all those bodies!” he suddenly called out. “Terrible, terrible! Oh, the bodies.” He finally blurted out what he had kept to himself for decades. Two days later, he died.
Anyone who’s ever gone to war often has trouble living and dying in peace.
Every day an average of 1,800 American veterans die, almost one per minute and about 680,000 per year. One in every four dying Americans is a veteran. But just as veterans live different lives, they often die different deaths. They may face unique end-of-life issues, clinically and culturally, versus those of non-veterans. As a result, they require end-of-life care that is equally unique.
As it happens, few healthcare providers possess the cultural competency to deliver end-of-life care for veterans that is adequately veteran-centric. The result of this is that all too often, veterans in hospice care suffer from avoidable poor outcomes.
The reality that veterans have different needs at the end of life was confirmed again and again while I completed my doctoral thesis on the issue, but most importantly, in my job as a palliative care nurse practitioner overseeing hospice care for veterans at the VA and in the community. As my research and hands-on experience have shown, veterans belong to a unique culture known as the military. The experience of military service can define how veterans live – and how they choose to die. For example, veterans who served in dangerous assignments and combat missions have endured violence that usually complicates the dying process. Unlike most non-veterans, they often experience flashbacks and terrifying nightmares.
Of 19.3 million U.S. veterans in 2016, 9.2 million were 65 years of age and older. That means most of the veterans dying now served in the Vietnam War. The Vietnam vet differs from previous generations of vets in life and in death. They came home from war less recognized, less appreciated, and less honored than those in World War II and the Korean War.
As such, Vietnam vets encounter special challenges receiving specialized care. Most are reluctant to go to the VA due to mistrust and what they perceived as poor treatment while in the military. Vietnam veterans are more likely to self-medicate and suffer from substance abuse, leading to drastically higher tolerance levels to pain medication given for end-of-life care. They are often undermedicated during end-of-life care and endure avoidable suffering and pain. Many are homeless and never receive adequate end-of-life care.
They’re also more reluctant than soldiers from other wars to enter hospice care in the first place, especially at the Veterans Administration, often with unfortunate consequences. In fact, an estimated 80 percent of all veterans will die in the care of healthcare facilities outside of the Veterans Affairs healthcare system. Veterans confronting a terminal diagnosis typically prefer to turn to the private sector for end-of-life care.
“We Honor Veterans,” a program of the National Hospice and Palliative Care Organization (NHPCO) in collaboration with the Department of Veterans Affairs, partners with private-sector hospice providers to promote veteran-centric education and improve the quality of care for our veterans. Our company, Amedisys, the nation’s third-largest hospice provider, is just such a partner and cares for veterans at 121 of its care centers in 32 states.
In doing so, we’ve seen how end-of-life care for veterans is changing. As a case in point, hospice care for veterans increasingly involves mental health – the psychological, social, and spiritual, including invisible wounds known as “moral injuries” – as much as physical health. More hospice providers than ever now educate staff – not only nurses and therapists but also social workers, spiritual counselors, and bereavement coordinators – to tailor end-of-life services and protocols to address the highly specific needs of our dying veterans.
Last year, in an important step toward achieving veteran-centric care, “We Honor Veterans” introduced a Level 5 certification, the highest designation attainable for hospice care for veterans. (Our own Beacon Hospice, in Hyannis, MA, is one of only nine centers so rated nationwide.) More hospice facilities now hold pinning ceremonies to honor dying veterans. They also arrange vet-to-vet “cafes” where veterans in skilled nursing facilities can meet other veterans for coffee in the spirit of camaraderie. They have a unique subculture and often feel comfort and ease sharing common experiences with other veterans.
What other actions can – and should – hospice providers take to do right by dying veterans? For starters, ask questions. Ask about their military service. Where did they serve, and what role did they play? Thank them for their service. Involve family, friends, and other caregivers in the conversation. Listen closely to the answers. They may have seen or participated in violent acts. They may finally wish to express feelings long bottled up, struggling to forgive their enemies and themselves. Bring in a volunteer veteran to visit at the bedside. Give the veteran an opportunity to express guilt, anger, and other emotions. Educate the patient and family, honestly, about the dying process to come. At all costs, prevent suffering.
Our veterans served with honor, and deserve to die with honor, too.
Vincent Ross followed his four older brothers in serving in the Navy during World War II. And now he was in his 90s and dying at home. But first, he would receive a pin, a navy decal, and a certificate to honor him for his service. The ceremony would play out in front of his wife of 69 years, his two daughters and two sons, as well as a priest from his church and staff members from Beacon Hospice in Leominster, Massachusetts.
At the end of the presentation, a social worker read a poem. The chaplain said a prayer. Everyone attending celebrated with coffee and cake. But before the ceremony could end, Vincent made a special request. He wanted everyone to sing “The Star-Spangled Banner.” He started singing first, everyone immediately joining in. Then he led them as they all saluted the flag.
Diane D. Blier is a palliative care nurse practitioner, Amedisys.
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