Hospice can bring light into a life when it appears that there is none. Seemingly a paradox, it is a philosophy firmly and jointly held by Sally Aldrich and Clay Jackson of Methodist Healthcare who have the privilege of working with hospice patients and their families. (See related article below.)
“It’s trite to say that people are called to this work, but people are called to this work. It takes a very unique individual to do this. They come to us and say this is something I need and want to do,” said Aldrich.
“A hospice worker has to have soul and to bring themselves – not just a skill set but themselves – to the daily work of traveling with patients, families and caregivers through what can be a very difficult process of adjustment, not just to physical illness but reduction in agency, change in family roles, and spiritual challenges…,” added Jackson.
Sally Aldrich, RN, MSN, is administrator and CNO of Home Care, Hospice & Palliative Services for Methodist and believes that the best hospice staff are able to see the whole package and embrace everybody in the picture. “It’s not just the patient dying of illness, it’s the whole family unit being impacted. The staff members are powerful advocates for allowing patients to chart their own course because they don’t impose their idea of a good death.”
“We have a mantra we use in hospice, ‘We invite the patients to dance but we always let them lead.’ It’s that patient’s life, it’s that patient’s death, it’s their journey,” she said.
Methodist LeBonheur Healthcare is opening its newly constructed hospice residence for children and adults at 6416 Quince the first week in July. Clay Jackson, MD, medical director of hospice, said they will be able to accommodate the needs of patients who arrive at Methodist’s new hospice residence through multiple venues: hospitalized patients may arrive directly from the hospital; outpatients who may have been cared for by hospice at home and need residential care; and patients may be admitted directly from the community.
“The hospice residence will not take the place of the hospice program. With 30 beds, the residence is a small piece of what we do; 90 percent of the care we give is in the home. Hospice is not a place but a philosophy of care. It is a way of giving care.”
Among its many amenities, the new hospice residence offers a central courtyard, which is designed for patients to walk out and enjoy the gardens or to be wheeled out in their wheelchair/bed to a porch area. For those unable to leave their rooms, there are casement windows that can be opened to allow patients to enjoy fresh air.
Methodist Hospice has been a provider since 1979 and had its beginnings as a volunteer organization; it was certified under Medicare in 1983. St Christopher’s in London, England is credited with having the first hospice in the western world in 1967. Methodist offered hospice care just over a decade later, becoming the 35th certified hospice in the U.S., joining the Methodist system at the same time.
One of the things Jackson and Aldrich are particularly proud of in Methodist’s hospice care is the heavy involvement of eight physicians on staff who are all board eligible or certified. “That results in a very rigorous approach in the medical management of patients’ symptoms,” he added. “Hospice is an interdisciplinary team, so physician management is only one piece of that and I would argue that the physician is not always the most important piece. The psychological/spiritual support given by nurses, chaplains, social workers, and other members of the team is equally or more important. Robust physician involvement is, however, a key element and we feel that we are distinguished from some other hospices by the level of physician involvement.”
Aldrich agreed that they are equipped to manage a high level of symptom control. “We see all diagnoses. We get some very sick patients with complex symptom needs (such as Alzheimer’s, stroke, heart failure, cancer) that some hospices may not be able to manage. Our physicians will go see the patients in their homes. And our nurses are all very experienced. We are fortunate in that we don’t have a lot of turnover – our associates come and they stay.”
Methodist hospice also takes care of children and has a rich history with St. Jude and Le Bonheur. “Our youngest patient was one day old. We have had profound experiences with some of the children who have birth defects or devastating illness,” Aldrich added. Just recently the staff held a birthday party for a little girl with cancer who loves princesses so the staff dressed up, got presents donated, decorated and bought cupcakes. “Our staff is tremendously celebratory – they try to help the family celebrate the good things and create wonderful memories.”
“One of the greatest gifts you can give a family is to (allow them to) be together, spend time together, share memories, and kind of walk together as that patient goes through death. That’s the greatest gift. I had a daughter say to me after her mother died, ‘it was the hardest work I ever did but it was the best work I ever did.’”
“We literally go in homes that are pitch dark, sometimes. Blinds are drawn; the patient is facing the wall.” I think that hospice can bring the light back in,” said Aldrich. The complexities of caregiving can be overwhelming; the physical demands alone are exhausting. “The caregiver gets more and more socially isolated; their world gets smaller and smaller; the patient’s symptoms become more complex; they don’t go to church anymore. …We can bring in symptom management and reconnect them with their faith community and within a week or two there’s light in the house; there’s activity.”
“We help to reframe the focus – we focus on what remains rather than what is lost,” said Jackson.
“We should view hospice not as the end of medical care but as the continuum of good evidence based care. We over-utilize technology and we woefully under-utilize hospice care, which has been proven time and time again to provide benefit for patients and their families,” said Jackson. “…It’s not appropriate to ‘over-medicalize’ death. People have been passing peacefully from this life without the benefit of tubes in their bodies for many thousands of years.”
“One of the biggest things we struggle with is that patients are not equipped with information and decision points early on in the illness,” said Aldrich.
According to Jackson and Aldrich, the biggest challenge to providing quality hospice care is late referrals. “Approximately 50 percent of our patients now live less than 12-14 days after admission to hospice,” said Aldrich. “Late referrals from physicians and surgeons remain a significant barrier to the provision of quality hospice care. We can do excellent symptom management for patients with a short length of stay with respect to physical needs, but we cannot provide in a short length of stay the psychological and spiritual support that hospice patients and families deserve,” added Jackson.
Discussions about the philosophy of care should begin between the physician and the patient earlier in life, not when the patient is in crisis,” Jackson stated. He advocates initiating discussions about the philosophy of care with patients at around age 50, and continue as the patient ages. This is especially important if chronic illness develops so that the physician can query the patient’s thoughts about treatments if they turn out not to be beneficial.
“At its core, hospice is about removing the technological imperative, where we do things because we have the technology and wind up doing things to a patient rather than for a patient …and replacing it with a therapeutic imperative, which is when we do what is best for the patient,” according to Jackson.
“Bereavement is so important for families, especially for a lot of our caregivers who have cared for a patient with a chronic illness such as Alzheimer’s – some 40 percent predecease the patients. It’s been a long journey for the caregiver and sometimes when the patient dies, the real work for that caregiver begins because they are at a loss. A woman may have cared for her spouse for many years. How does she heal from that and begin to live again?” added Aldrich.
Caregivers for patients with chronic diseases often sacrifice their own health. Numerous studies show that caregivers for patients with chronic illness should be considered second order patients,” stated Jackson.
“Hospice brings together three elements: help, hope and healing,” concluded Jackson. “If a patient has a chronic or life-limiting illness, she is often debilitated to the point that help is needed for her to remain in the home. Hope, in that there is a great deal of hope associated with hospice for good days. Many times we cannot add to the days but we can change the quality of those days. Finally, we promote healing: some of our best work is done after hospice care. We follow the family for 13 months to complete their bereavement needs. There are memorial services, counseling, phone calls, visits, letters, grief camps for children – in order for families to feel continually supported and connected even after their loved one dies.”