Death and dying are an intrinsic aspect of our work as nurses, and hospice is a nursing specialty for those who feel especially comfortable and conversant with the care of patients facing the dying process. Hospice also involves the nursing care of hospice patients’ loved ones, which can include a great deal of education, encouragement, and psychosocial support throughout the journey.
Hospice and Palliative Care
Regarding hospice and palliative care, the National Institute on Aging teaches that palliative care can include curative treatment. Hospice is focused solely on symptom management and support through the dying process. Their website states the following:
“In palliative care, a person does not have to give up treatment that might cure a serious illness. Palliative care can be provided along with curative treatment and may begin at the time of diagnosis. Over time, if the doctor or the palliative care team believes ongoing treatment is no longer helping, there are two possibilities. Palliative care could transition to hospice care if the doctor believes the person is likely to die within six months. Or, the palliative care team could continue to help by increasing the emphasis on comfort care.”
“Like palliative care, hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person’s illness are stopped. Hospice is provided for a person with a terminal illness whose doctor believes they have six months or less to live if the illness runs its natural course.”
James Dibben, RN, is a hospice nurse and administrator, podcaster, advocate, and educator who loves teaching nurses about hospice and helping the public understand how hospice care can ease the burdens of dying.
“99% of all hospice deaths occur outside of an inpatient unit,” Dibben states. “Most hospice patients die in their homes. This can be out in the community, a long-term care facility, an assisted living facility, or an independent living community.”
He adds, “Hospice is 80% psychosocial and 20% medical. I love the psychosocial work that goes with hospice nursing. I love being the comforting voice in the room and helping patients and family members have peace with their decision to pursue comfort over cure.”
In terms of the emotional aspects of hospice, Dibben observes, “It’s easy to compartmentalize when a patient is on services for just a few days or weeks. Hospice can become deeply emotional when a relationship with a patient or caregiver is cultivated over many months. Sometimes, hospice nurses experience death with no closure, which can be very emotional.”
“I try to help family members focus on the importance of honoring the wishes of their loved one, Dibben adds. Sometimes, caregivers can start to doubt what they’re doing. It can be difficult not to call 911 as a caregiver. Sometimes, patients have experienced months or even years of hospitalizations, but once palliative care has been chosen, it can be overwhelming to ‘not do anything’ when someone starts to die.”
Palliation and Symptom Management
When supporting a patient in the dying process, there are areas of focus for hospice, and Dibben provides an outline for each.
Pain: “Opioids are the standard for end-of-life pain management. Morphine in liquid form is where we all start, as it’s considered the standard in hospice. There’s a misconception that morphine is a strong opioid used to hasten death. Morphine is equivalent to hydrocodone — this means that anyone already using hydrocodone for pain management can be converted to morphine on a one-to-one basis.”
Shortness of breath: “Contrary to popular belief, oxygen isn’t the best solution for dyspnea in end-of-life care. Morphine and other opioids can be very effective in relaxing the respiratory system and controlling air hunger.”
Delirium: “This may be the most challenging end-of-life symptom. Many patients develop severe hallucinations and restlessness at the end of life. These patients may even attempt to climb out of bed when they’re just hours from death, and antipsychotics are the drug of choice. Even with the use of these meds, many patients continue this behavior for hours or even days before death. This can be exhausting and require multiple caregivers broken down into shifts. Eventually, these ‘terminal restlessness’ symptoms subside, and most of the time, the patient will die shortly after the hallucinations stop.”
Excessive secretions: “Our saliva glands produce a liter per day, and most dying people stop swallowing their saliva in the last 24-48 hours of life. This is what causes the ‘death rattle.’ Several medications help with secretions, but none can stop it completely. Suction machines can be provided, but generally, these secretions are so deep that it’s easy to cause injury if deep suctioning is attempted. The sound of the ‘death rattle’ can be disconcerting, but it’s best to educate the family about it and help them understand that this is not a sign of discomfort.”
Facing Death
Some nurses may feel that working with patients expecting to die might be difficult in terms of witnessing their suffering. Dibben shares his views on this aspect of hospice:
“I see it as my job to discover the source of my patients’ suffering and then find out what comfort looks like for each individual. When the patient can’t express what comfort looks like to them, we look to the caregiver for input”.
Regarding facing death, Dibben shares, “It’s not always necessary to have any answers. Everyone sees life and death differently. It’s my job to listen more than speak when we get into the psychosocial part of life and death. I like to ask questions and listen. This helps me understand their belief system and cater conversations to explore at a deeper level.”
Is Hospice Nursing for You?
Every nurse has areas of nursing care that make sense for them and are aligned with their preferences, personality, and temperament. For those who like high-adrenaline, fast-paced environments, hospice would likely feel far too slow for their liking.
For nurses who enjoy the quick turnover of patients in trauma or emergencies, frequent longer-term nurse-patient relationships and close partnerships with patients’ family members and loved ones might not feel like a natural fit.
And if, as James Dibben shared, hospice is 80% psychosocial, then nurses who feel more comfortable providing more hands-on care might feel outside their comfort zone.
Like any area of nursing practice, it’s all about finding the right fit. For nurses comfortable with talking about death and dying, educating patients and their loved ones, and focusing on symptom management, comfort, and spiritual and psychosocial support, hospice could truly be a calling like no other.
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