Nurses who find their vocation in hospice may be among the most understanding people on earth. As a nurse who has helped many, perhaps hundreds of patients transition into palliative care and hospice, I thought that I would be prepared to handle placing my father into home hospice after a stroke. At 90, my father had vascular dementia due to chronic infarctions. The call from his provider informing me that he had had an embolic stroke with a hemorrhagic component was not completely unexpected. After his anticoagulation was reversed, I knew that he was likely to have another stroke soon.
Walking the tightrope: daughter, nurse, caregiver.
I guess that’s the curse of the nurse. No false hope for me. As the nurse in the family, I walked the tightrope of caregiver, support person, and grieving daughter. The help from the hospice team was extraordinary, but the overall care and responsibility was placed on the family. It was a bit of a shock to me. I can’t imagine how families without members in health care manage.
My father did not pass his swallow test, and he had left-sided paralysis; however, he was initially able to communicate, with some effort. In fact, the priest who saw him on the first day was obviously curious as to why I felt that my father needed last rites so urgently.
On day two, Dad was less alert. He had the second stroke approximately 48 hours after the first. I called hospice to let them know, in addition providing them with a clinical report and adding my presumptive diagnosis. Although I swiftly realized that I was really just a frightened daughter, I didn’t have more than a few seconds to stop and grieve because I needed to jump into the role of family support.
Hospice support, but from a distance.
It was a disorienting experience, playing this role. I’d just assumed that someone from hospice would come to evaluate him, but found out that this isn’t how it works. They told me what to do, how to handle symptoms as they came up, and that they would be there in the morning. Of course, they were right—he did not pass away that night; to my amazement, he lived another 48 hours.
I was thankful for my training, and did my best to keep my “nurse hat” on, but there were times when I felt utterly overwhelmed. Hospice supported me, supplied me with a magic box of medications to give my father, but the work was left to the family.
And it is a lot of work: turning every two hours, two- to four-hour medication administration (around the clock), skin care, mouth care, changing soiled pads, range of motion, communication, cool baths for temperature spikes, and preventing pressure ulcer formation.
Lessons learned.
As a nurse, I could not help but assess the entire experience and distil it to lessons learned.
- Number one: Hospice is terrific. I was always a supporter, but now I have a deeper appreciation.
- Number two: Mixed messaging from any health care provider about the patient’s prognosis , however well-meaning, can create tension in the family. There were a couple of individuals who may have wanted to impart a glimmer of hope; however, it was confusing for some of my family and added stress to an already stressed family.
- Number three: Most of the instructions were spot-on, but one, I thought was way off. The family is told that the “death rattle” is more disturbing to the family than to the patient, I call baloney on that one. Nothing relieved it for very long. Dad struggled to clear the mucus. A Macy catheter was inserted (a brilliant device invented by a nurse) to eliminate the sublingual medications. I had never heard of it, and objected at first (it is a low-pressure tube placed in the rectum), but it was a game changer. Not sure why we do not use them in acute care.
- Number four: I’d never, as a nurse, fully understood how deep a family has to dig into their very souls to keep their loved ones at home at the end of life. That brings me to my last lesson.
- Through my father, I redefined what my capacity is, what my abilities are, and what the very boundaries of my endurance are. All of which now far exceed my previous notions.
I have a new appreciation for the families who manage their loved ones at home; they are truly unsung heroes.
Mary Stachowiak, DNP, RN, CNL, is an assistant professor in the Division of Advanced Nursing Practice at the Rutgers University School of Nursing, New Jersey.
To Amy Getter: Thank you for your expert comments. You are 100% correct, one of the hospice nurses said that the “death rattle” could be managed if caught early. Unfortunately the hospital did not put a Scapolomine patch on prior to discharge and we had to travel a half hour (each way) to pick up the patches which were not scheduled to be delivered for several more hours. We just did not manage to get a head of it. Now I know to assure the patch is in place prior to discharge home on hospice for individuals who fail swallowing tests.
Mary: You are so, so right in designating family carers as the unsung heroes of hospice, although many hospice nurses do know this and will agree, as I do, how the really hard workers who care for the dying are the family, not the hospice team. I am always saddened, though, to read stories about hospice on the sidelines and not quick to respond to families during times of overwhelming symptoms, or signs of actively dying. I just want to highlight a couple of things you mention: The “death rattle” IS distressing and can often be managed (at least to some degree) but mostly only if recognized at early onset, with use of medications to dry secretions (even though there is little “evidence based” research that supports this, if you read the one study closely that is frequently quoted– most of the time medications are started too late and not made routine to reduce the secretions), in addition to other practical instructions, it just really doesn’t help to try to minimize how hard it is to listen to. And anytime a patient has a significant change (like your father having a stroke) a nurse should make a visit–that is what 24 hour care being available means for a family (not “your nurse will come in the morning”). Families–insist on this! This is one reason hospices are required to have more frequent visits at the end of life, to actually be present for the families during those very difficult times, particularly in the final days. Kudos to you and all the families who are present day in, day out, and provide care in the home– what a demanding, exhausting, and ultimately rewarding gift to your loved one.