Many people want the opportunity, however emotionally difficult, to sit at a dying loved one’s hospital bedside and hold a hand, pray, share cherished memories or simply be there for them. But that’s no longer possible with hospitals barring visitors during the coronavirus pandemic, with very few exceptions. Now, cellphones and iPads connect family members with relatives who, in the most serious cases, have a range of awareness but cannot reply. In these situations, the role of palliative and end-of-life specialists and the importance of advanced care planning have been amplified.
“We strive to provide excellent care to all our COVID-19 patients, with the goal they’ll be able to return home, and many do,” said Ari Berger, an internist and palliative medicine specialist at Holy Name Medical Center in Teaneck. “However, when several doctors agree it is unlikely a critically ill patient will recover, we do all we can to relieve end-of-life suffering.”
It’s also when his team of two physicians and two nurse practitioners begin end-of-life conversations with family members. The discussions focus on ensuring family members understand the medical approaches that have been tried and why they’re not working, and also to prepare them emotionally for their loved one’s passing.
University Hospital in Newark has a long history of integrating palliative and end-of-life care approaches within its trauma and critical care units, said Susanne Walther, director of palliative care. To keep pace with an influx of COVID-19 patients, her core team of two advanced practice nurses and two counselors now includes gynecologic oncology surgeons experienced with caring for critically ill patients and an emergency room physician who is board certified in palliative care.
“By the time we see COVID-19 patients, the virus has advanced very, very quickly, they are intubated and unable to speak, and often, actively dying,” she said.
Virtual bedside visits
While the coronavirus hasn’t altered clinical aspects of end-of-life care, both Walther and Berger said, communication of family members with patients has transitioned from face-to-face to virtual bedside visits. At University Hospital, which serves primarily poor communities, family members can borrow tablet computers if they do not have their own. Staff at both hospitals, in addition to their clinical responsibilities, become communication intermediaries, holding cellphones or tablets for patients too weak to do so.
“We hear some very personal, extremely heartbreaking conversations,” said Berger. When death appears imminent, the most experienced palliative care or hospice team members are in the room. The act of holding a tablet as family members say goodbye is a “sacred duty” and emotional for everyone, including the staff. Berger has witnessed about 50 of these conversations, and when asked how he deals with it all, paused and said, “I go home at night and recharge and rest; take a shower, listen to music and try to relax.”
These specialists also take comfort knowing that, while they’re addressing the needs of the very sickest COVID-19 patients and their families, many people with the disease recover.
If there’s one thing the coronavirus demonstrates, it’s that it’s never too early to document advanced health care preferences. While the elderly represent the largest number of COVID-19 deaths, the virus affects people in every age demographic, from those with underlying medical conditions to the seemingly healthy. It’s important to document health care wishes because in severe cases of the disease, intubated and heavily sedated patients are unable to communicate with their health care team at a time when many decisions need to be made.
Health care proxies, advance directives
Well before the coronavirus, New Jersey has tackled palliative and end-of-life care through advisory councils and new laws, given the state’s growing elderly population and its reputation for aggressive medical treatment of the dying that might be against their wishes. Beginning in July, for instance, hospital, long-term care and nursing home staff must complete yearly training on these issues, including how to discuss them with families. Emergency room physicians are required to discuss palliative care options with seriously ill patients who come through their doors.
Even with such efforts and personal physicians’ promptings, relatively few Americans have nominated a health care proxy or filled out an advance directive. A health care proxy is someone a patient designates to make health care decisions for them when he or she cannot, and an advance directive is a document specifying what type of care a patient does and does not want to receive. One team of researchers found only 37% of 800,000 people surveyed had completed some type of advance directive. Walther said unless they’ve been University Hospital patients before, very few of the COVID-19 patients her team sees have either a health care proxy or an advance directive. And sometimes, that makes the already difficult conversations they have with family members even harder.
“Not many people want to think about their death,” she said, “but even writing the name of a health care proxy on a piece of paper helps. These forms give you a voice on your medical care when you might not be able to communicate.”