Patients who are receiving palliative care take comfort by interacting face to face with all members of their care team and, equally as important, with their family members.
“A diagnosis of a long-term condition that requires everyday intervention or support is difficult for families to absorb under the best of circumstances,” explains Dr. Greg Rachu, medical director for HopeHealth.
Of course, the worst pandemic in 100 years is not the best of circumstances. COVID-19 has added a thick layer of confusion and concern for patients and families. At many health care facilities, the restrictions on visitors that began in March continue today. Patients are battling the effects of isolation, while health care providers are adapting the way they work.
Dr. Rachu leads a palliative care team of nursing staff, social workers and chaplains who care for patients in primarily inpatient settings. Reflecting on this unimaginable year, he says staff found themselves serving as bridges between patients and families like never before.
“With COVID restrictions, our nurses, certified nurse assistants, social workers and chaplains immediately stepped up to provide daily care and interaction. They put on cumbersome PPE to comb hair, brush teeth and hold hands,” Dr. Rachu explains.
“Anecdotally, that isolation and loneliness likely accelerated the clinical decline and ultimate death of some terminally ill patients.”
The impact of isolation on palliative care patients
The purpose of palliative care is to improve quality of life for patients with health conditions that diminish day-to-day function. These conditions can include cancer, heart disease, neurological issues, strokes, pulmonary diseases, dementia and failure to thrive. (Learn more about palliative care in our blog: The ABC’s of curative, palliative and hospice care)
This year, many palliative care patients who were unable to see—and touch—their family members experienced heightened anxiety and deepening depression.
“The longer patients were isolated and the greater their loneliness grew, the more detrimental their decisions became,” Dr. Rachu explains. “Anecdotally, that isolation and loneliness likely accelerated the clinical decline and ultimate death of some terminally ill patients and sadly, contributed to disease decline for others, particularly those with dementia.”
He references one patient, 65-year-old Paul*, suffering with recurring cancer who could no longer receive visitors: “As his sadness intensified, it affected his decision-making, culminating in his refusal for another round of chemotherapy, which would have helped him.”
In cases where Dr. Rachu knew direct family contact was instrumental to his patient’s care plan, he pleaded with the hospital Command Center and floor managers to approve an in-person visit. “I tried everything I could,” he said.
There are a few slivers of light in this crisis, even if bittersweet. Dr. Rachu says some end-of-life patients accepted appropriate hospice care sooner than they might have otherwise.
“Transitioning from palliative care to hospice care can often be a difficult decision,” he says. “But rather than be resuscitated one more time, some patients chose the comfort hospice care provides. Since loved ones can visit hospice units, even during the pandemic, it’s a supportive environment to say goodbye.”
“Even a nod of the head as they pass in the hall was a welcome acknowledgement that they are not alone.”
Communication and support are key
When communicating with patients and families, palliative care providers are especially attuned to reading body language and eye contact to reach beyond what is being said. “It’s in the eyes,” Dr. Rachu says.
They also use a technique called the gap mechanism. A gap is an intentional pause in conversation, which allows for patients and family members to fill in, as a means to enhance communication and better understand their perspective.
When safety precautions prohibited family visits, Dr. Rachu and his colleagues adapted quickly by using video conferencing to share information with family members, outline options and ensure consistency of care.
But eye contact, body language and emotional cues are not the same over video. For example, it was nearly impossible to use the gap mechanism. “In too many cases, the family member thought we disconnected, and that led to more anxiety and agitation,” says Dr. Rachu. To compensate, he would ask a question specific to one aspect of care, gauging the response to determine how best to guide the conversation next.
Health care providers are also communicating differently with each other.
To deal with the relentless stress during the pandemic, Dr. Rachu and his colleagues attended weekly staff meetings, called Balint groups, to discuss challenging cases. Even a nod of the head as they passed each other in the hall was a welcome acknowledgement that they are not alone.
“COVID may have changed the way physicians deliver care, but not the quality of that care.”
The patient is still the guide
Empowering patients and families is always a priority in palliative care, but it has risen to the forefront in a significant way this year.
“Some conversations recommending therapies and support services have taken on new urgency, but they still have to be at the pace of the patient,” Dr. Rachu says. “The best advice I can give is to allow the patient to control the forum. Ask permission to discuss a topic, and respect the answer, even if it’s no.”
Care team members, as well as loved ones, can keep the door open by asking patients questions like: when would you like to talk about this? what needs to happen for you to accept a specific intervention? how much information do you want?
“The son of a patient told me his father was overwhelmed by the amount of information, and he preferred we only speak with his son,” recalls Dr. Rachu. “I made a note on his chart: ‘Talk to son only.’ That seemingly small clarification eliminated everyone’s anxiety.”
Dr. Rachu also understands that the sense of helplessness that loved ones feel is ten-fold during the pandemic. He’s made a point to remind family members that taking care of themselves is as essential as caring for others. “If you need routine, diagnostic or follow-up care, make an appointment,” Dr. Rachu urges.
“COVID may have changed the way physicians deliver care, but not the quality of that care,” he says.
*Name changed to protect privacy