The following comes from a December 2 Angelus article by R.W. Dellinger:
After putting on yellow hospital gowns over their white jackets, three nurses from the palliative care team at Providence Little Company of Mary Medical Center in Torrance walked into room 497.
“How are you doing?” asked Marianne Ayala, nurse manager of the team, kneeling on the side of Roselia Nuñez’ bed. Looking up, the elderly patient forced a small smile.
Nurse practitioner Salve Bautista checked her vital signs, while nurse Rebekah Riemer comforted her.
After a few minutes, Ayala went over to Nuñez’ daughter, Isabel Uribe, who was standing nearby in the small rectangular room. They talked quietly about a wound infection her mother had developed from recent surgery.
The daughter said she would like the doctor to call her brother in San Bernardino to explain the dwindling medical options left for their mother, who had congestive heart failure as well as being diabetic and anemic.
Certain treatment options could extend her life, but could also further her suffering.
“I don’t want to make that decision to shut things down,” said the daughter, crying.
A ‘gentler’ approach
Earlier, the managing palliative care nurse had told me the most challenging cases are patients who are clearly at the end of life and would really benefit from a “gentler” approach like hospice.
During hospice care, which is often done in the patient’s home through a visiting hospice nurse and family caregiver, all treatments such as chemotherapy, surgery and lab works are usually stopped. So with most programs, the patient is expected to live only six months or less. Making the dying person as comfortable as possible becomes the focus.
Many times today, says Ayala, there are situations where gravely ill patients can’t speak. And they have not filled out an advanced directive. The directive specifies their end-of-life medical wishes, or gives power of attorney or health care proxy to make decisions when they are incapacitated. So these seriously sick individuals often wind up in a hospital’s ICU (intensive care unit) connected to all kinds of tubes and machines.
“We see what the path ahead is going to be,” she said. “We know that the treatments that are being given or offered are futile. The patient is not predicted to survive or have any better quality of life.
“And yet families — just the way medicine is practiced now — have to decide oftentimes whether to continue these aggressive treatments. So I think we put families in a really hard place because of that. There’s something to be said for doctors making recommendations and families taking them into consideration. But often we see families who become extremely resistant to that. It’s like they know better, and they’re going to keep treatments going for however long they can.”
After a moment, she added, “So that is hard to see. What we see looks like suffering, which is hard to tell at times, but it looks to be the patient is suffering. But the family, because of their own suffering, will not deal with a lot of our counseling and are really resistant. So for me, that’s the hardest thing.”
In the palliative care center’s conference room before our patient visits, I’d asked the three palliative nurses on the team if people could really “die well”? It just seemed like such a contradiction.
“Oh, yes,” came back Ayala. “I would say absolutely, yes. I think that dying well for patients and for their loved ones means dying in a way that is aligned with their goals and preferences. And so that’s really a hallmark of what we try to accomplish in palliative care is helping families discern what those goals and preferences and values are. And then it’s trying to set up a support system or situation where that can happen.”
She says for some patients and their families a good death might mean doing everything possible to keep them alive. And the palliative team respects that as well.
“But typically a good death is, I think, where patients have at least acknowledgement and understanding of what’s happening,” she explained. “People are able to have their families and loved ones around them. People are able to say the things that they need to say to each other. So we try to foster that.”
“Death itself in our society is just considered not good because it takes away from what is known and kind of brings you to the unknown,” said Bautista. “But I would define a good death as when a patient would say, ‘I have lived a full life,’ and they’re not dreading whatever may be.