My friend Jeff told me, “I wish we had investigated palliative care and hospice programs much earlier. We might have been better prepared for the last month of Dad’s life.”
Jeff, an MD himself, now thinks that their family’s denial of how close their father, Reuben, was to dying caused them to avoid strategically building his end-of-life medical team.
Six weeks before his death, Reuben was walking 10,000 steps a day and talking with Jeff regularly. He had prepared his end-of-life documents and assigned his daughters to be his medical and financial power of attorneys. His three sons lived farther away, but they were integrally involved in their father’s care.
Everyone recognized that he needed more assistance. They planned to move him from his independent living facility to assisted living with memory care, but the pandemic struck and moving him was no longer an option.
The lockdown was difficult.
Reuben quickly became agitated and aggressive. He struck a member of the staff where he lived. The family was asked to address this situation immediately. Reuben was swiftly moved to a respite nursing facility. There he was given too much Ativan, which created more problems. Through their medical connections, Reuben’s family was able to transfer him to a nearby psychiatric hospital. There he improved so much that he even established a routine of caring for plants in the nursing area.
Unfortunately, this calm was short lived.
Reuben became confused and began falling, and was consequently transferred to the cardiology floor of the local hospital. Atrial fibrillation was suspected, but a diagnosis was not confirmed. No treatment was recommended, and a release was ordered. Even though the family included two medical doctors and the services of a privately hired care manager, the next steps were unclear.
Setting a strong intention would turn out to be essential.
The family asked for a palliative care consult to figure out how to best care for Reuben. They were told that it would take several days to arrange, so they requested a hospice consult instead. The charge nurse commented that hospice was only for cancer patients, but Jeff’s family knew that this information was incorrect. The disease progression of terminal cancer is more predictable than degenerative diseases such as Parkinson’s, Alzheimer’s or heart failure. Because of this, doctors tend to refer terminal cancer patients to hospice care more readily.
Reuben’s family persisted with their request.
Once the hospice intake nurse arrived, a care plan fell into place quickly. She assisted in the negotiation to return Reuben to his first-floor apartment at his original independent living facility. Proper equipment – hospital bed, commode chair, and wheelchair – was delivered. The family could come and go through the exterior door to Reuben’s apartment, and thus avoid contact with other residents and staff members.
Reuben’s family members spent the next four days saying, “We’ll be okay.” “You are good to go.” “Thank you.” “I love you.” When the hospice nurse visited and told the family that Reuben’s death was imminent, the family was prepared.
Together they laid their hands on him softly and said their last goodbyes.
Morning Intention Ritual
Setting an intention for the day gives me focus.
Tips for Understanding Palliative and Hospice Services
Palliative care and hospice are similar in both approach and benefits.
Each provides a team offering medical, psychological and spiritual care. Each team focuses on relieving suffering and controlling pain due to chronic, degenerative and terminal illnesses. Your loved one’s culture, beliefs, values and family are incorporated into the care plan.
Most often expenses are covered through private insurance, Medicare or Medicaid.
This is how they differ:
Palliative care is an additional layer of support on top of traditional medical treatments helping your loved one achieve the best quality of life. It may be focused on recovery, even if the illness is considered terminal.
Hospice provides end-of-life care when there is a life expectancy of less than six months. Curative medical treatments stop. The primary focus is comfort care.
While it is common for loved ones to transition from palliative care to hospice, it isn’t necessarily required or needed. Both palliative care and hospice offer a full range of support to you and your loved one through the end-of-life process.
Resources
10 Daily Rituals for Living with Intention, by Julie Skon on Insight Timer App