Home for the Holidays (Not Really): Part I

EDITOR’S NOTE: Not everyone will be home for the holidays this season. Healthcare doesn’t ever take a holiday. Emergency departments across the country will be prepared to admit patients on Christmas Eve right on through the New Year. Holiday work schedules have been in place for some time now, and caregivers will also be checking in, ready for the long nights ahead. For those who tend to the terminally ill on Christmas Eve, they’ll be prepared as well to provide comfort and support. For this new series, RACmonitor Publisher Chuck Buck interviewed those who will not be home for Christmas – but who most likely will find a sense of personal satisfaction when they’ll be on the front lines for the holidays.

Healing, not Curing: Hospice Care
She doesn’t know, at this time, if she will be working Christmas Eve.

If she finds her name on the schedule, she’ll not be disappointed, because even though she and her colleagues share responsibilities as they rotate holiday shifts, for Abigail, a hospice nurse in San Diego, the experience is rewarding – in part because she likes wishing her patients happy holidays. 

In the days leading up to Christmas, Abigail will traverse a huge swath of her facility’s service area, providing comfort and care to terminally ill patients living in their homes in Chula Vista, National City, Imperial Beach and San Ysidro, Calif. – border towns along the politically charged U.S.-Mexico border. Nationally, 1.43 million Medicare beneficiaries were enrolled in hospice care for one day or more in 2016, according “Aging in Place.”

But even as she dispenses compassionate care to her elderly patients (75-95 years of age), the smallest gesture of wishing patients well aligns perfectly with how she sees her role as a hospice nurse.

“I feel like, first of all, (my responsibility) is to provide comfort to patients and families and to heal, not cure, to heal, regardless of if it’s emotional or physical,” Abigail said. “How to accomplish this is to provide meaningful education and communication, to fill that gap of knowledge, (and) once patients have that knowledge, it creates a bridge between the concept of death/dying and the patient/family, so that the idea itself becomes more natural than frightening.”

Abigail addresses the patients’ physical needs by providing relief of pain and discomfort through medication, music, distraction, and the healing of wounds. Emotionally, she allows patients to express their feelings – fear, loneliness, sadness, anger, or frustration, treating, as she says, “every single patient with the dignity and respect they deserve,” noting that she is “often amazed by the results just by listening and responding with empathy, and just by touching the basics of humanity.”

Hospice Nurse or Case Manager? 
As a hospice nurse, Abigail can sometime feel as if she is the case manager – and, in some cases, the patient advocate.

“I feel like both (hospice nurse and case manager),” said Abigail. “Each patient is a unique individual, and the way I present, my roles are sometimes different. For instance, if I have a patient who I suspect of being abused or neglected, I will definitely play an advocate role, and make sure the rights of the patients are carried out – and not just written on a piece of paper. And after that’s accomplished, then I am in a case manager role.”

To Abigail, her patients aren’t just cases. She sees them as individuals, and believes that her role is one “that leads the hand to touch the heart of medicine – which is to heal and to hand back their dignity, no matter how long they have left on this earth.” 

Reconciliation: Family and Patients
Although she said that most of the time, families and patients have the same wishes, there are, however, some cases in which they don’t always agree on the plan of treatment. Specifically, the discrepancy most often involves a “do not resuscitate” order.

“Interestingly, patients are more accepting of the prognosis than their families, which is quite understandable, because they are losing their loved one in these circumstances,” Abigail said.

Abigail said she usually informs family members that hospice care is more appropriate for patients, because the disease has rendered them physically frail, while advocating to dissuade the use of, in her words, “trauma heroic measures” and their impacts. Given the slim success rate of resuscitation outside the hospital setting, noting that it is even lower with terminal patients, she believes that education and emotional support is more important than anything else.

“I think my main role is to normalize the death and dying process for the patient,” she said.

The Right to Die: Love and Respect
Abigail found herself normalizing the dying process when she was asked by a patient to be at his bedside when he had sought medical help to end his life. California, as well as Colorado, Hawaii, Maine, New Jersey, Oregon, Vermont, Washington, and the District of Columbia have passed “death with dignity” laws that allow the terminally ill to voluntarily receive prescription medication to hasten their death.

In this case, one of Abigail’s patients had end-stage cancer and was slowly losing strength and a sense of independence. She said that over the previous weeks, when caring for him, it became obvious that he was not only losing his health, but was becoming traumatized by the experience, and didn’t want to suffer more pain.

“He did not want to suffer pain, (and) more so, he did not want the disease to take over his life,” Abigail said. “I think he had been considering this option for a while before he made the decision, (and) was well-supported by his family. They have had a long discussion about this.”

For Abigail, age 31, being there, she said, was an eye-opening experience.

“He was at home, and his family were all present,” she recalled. “All hovered around his bed. There was calm and pleasant chatting about his life. He told me a lot about his life, and what he had accomplished. There were proper farewells. All the things that were meant for him and his family to say to each other just spilled out at that moment.” 

Abigail said that process took approximately 30 minutes.

“And I just merely held his hand the entire time, to let him know someone was there,” Abigail said. “There was no fear, no blaming, just ‘I love you’ and ‘I will miss you.’ That’s what this experience was all about: love and respect. And to realize that with how short life is, no one should have time for anything else except for love.” 

Abigail acknowledged that the right to die is a controversial topic, but she added that, in the end, patients themselves should make this decision –  because, as she said, we have no way for others to feel the precise way as their loved ones.  

“It’s my duty to support them through the dying process, regardless,” Abigail added.

She’ll have more patients to see in the next several days, but maybe not on Christmas Eve. Time will tell. As it always does.