How the Caregiver Can Best Utilize the Hospice Team
One of the reasons I love working in hospice is the powerful role hospice care workers play in supporting and educating patients’ families; the patient and the family are our unit of care. Death (especially when it takes place in the home) physically, energetically, emotionally, mentally, and spiritually affects everyone. This blog should help you to navigate and best utilize the hospice team. They are there for YOU too!
I admitted a 60-year-old gentleman named Kenneth* to hospice whose daughter lovingly took care of him. The daughter had two children and a full-time job. Kenneth moved in with his daughter that same week because of his steep decline. Her living room furniture now included a hospital bed, an oxygen concentrator, and tubing running throughout the house. She was grounded and cool in a crisis; her kids were another story.
I told her right away, “We are here for you too. You can call anytime, night or day.” She asked if I babysat, and I looked at her children terrorizing the cat and said matter of factly, “Um, no.” We laughed, and she looked at me seriously and whispered, “I do not know how I am going to do this.”
I honored her rightful feelings of disbelief at her sudden current situation and told her about our services: “Hospice nurses are available 24/7 by phone. If you want to call 911, ideally call hospice first and a nurse will come out to assess the situation.” She looked relieved. Her dad had a history of ER trips in the middle of the night for sudden shortness of breath.
“Hospice nurses are available 24/7 by phone. If you want to call 911, ideally call hospice first and a nurse will come out to assess the situation.” She looked relieved. Her dad had a history of ER trips in the middle of the night for sudden shortness of breath.
Nurses: Education, Advocacy, and Symptom Management
The nurse will usually schedule visits between one to three times a week, and each visit lasts 30 minutes to an hour. Nurses physically assess the patient’s heart, lungs, wounds, cognitive status, etc. They also provide an enormous amount of education for the family regarding their physical care — managing their drains, catheters, wounds, transferring from bed to commode, and safety. They provide information on managing medications and symptoms like pain, anxiety, and shortness of breath.
“Kenneth, how are you doing managing your medications?” I asked during the admission. “I am fine,” he said. His daughter shook her head, “Dad, you are always short of breath and sometimes you get confused.” We reviewed his medications, and I offered an explanation regarding the use of morphine for his shortness of breath. Kenneth agreed to take some for his labored breathing.
He also agreed to let me organize his meds so his daughter could at least make sure he was taking the right medications at the right time. We put them all in a mediset container and placed them safely in a high cupboard away from the kids who had just disassembled his nebulizer machine.
Nurses emotionally support the patient and the family. They provide information to help the patient clarify what is most important to them, and importantly, they advocate for the patient. All that hospice entails is new to many caregivers, and the unknowns may feel terrifying. Hospice nurses have the skills and experience to walk with you on this journey and anticipate what’s next, which often helps minimize one’s fear.
Home Health Aides: Effortless Tender Care
The physical care-taking of a hospice patient is overwhelming. Home health aides assist with the patient’s personal care. I always advocate for families to utilize the home health aide two to three times a week, but Kenneth quickly declined. I looked at his daughter whose shoulders slumped immediately. Patients often resist the home health aide, but honestly, this is one of the best resources we have.
Home health aides are kinda magical; their assistance helps to conserve energy for everyone. It takes a lot of time and physical exertion to prepare for the shower or bed bath, clean the patient, and then clean up after the escapade. I am an exhausted, sweaty mess afterwards. The aides do this effortlessly and gently.
Home health aides pay attention to a patient's physical functioning, pain management, and risk for pressure injuries (bedsores).They sometimes see body parts nurses don’t and can offer details about potential yeast in the groin area or incontinence issues. You can ask them for tips and tricks on how to minimize bedsores, reposition the patient, and safely get the patient in and out of a bed. They will demonstrate how to make a draw sheet to simplify moving a bedbound patient and turning the patient in bed. They are a wealth of often untapped knowledge and kindness.
I encouraged Kenneth to schedule a weekly aide to assist with bathing and safety. He reluctantly agreed. He just needed to meet the aide, and he was hooked. It was a welcome relief to have someone who was not his daughter assist him in the shower.
He just needed to meet the aide, and he was hooked. It was a welcome relief to have someone who was not his daughter assist him in the shower.
Social Worker: Resources and Relief
The assigned social worker will call in the first week, so it may be helpful to know how to proactively use them to support you. They can provide resources for finding caregiving services, choosing a funeral home, and finding alternative living possibilities if the patient’s care cannot be managed in the home. They often serve in an advisory role and will give you a large list of options for supplementing or revising your care. You may want a friend to help you with the next step of internet searching and calling.
The social worker can help answer questions about insurance, finances, and advance care planning. They are great at connecting families with community resources including meal assistance and applying for Medicaid.
They can navigate family dynamics and facilitate family conferences; it’s not uncommon for disputes and differences to occur during this time of grief and crisis. For example, a patient may want to stop the intake of food and fluids to expedite their death, an approach the family may disagree with. The social worker can skillfully address these concerns.
They coordinate care including planning for smooth discharges and admissions with hospitals, nursing homes or facilities, and facilitate respite care.
They provide wisdom and resources about children and death.
They can also share coping skills and provide grief support and counseling for individuals, couples, and families.
Financial issues, grief, and frustrating relationships cause suffering that cannot be medicated away. Social workers can provide resources and relief during a stressful time.
The Chaplain: Support for the Big Questions
“Kenneth, are you affiliated with any religion or do you have any spiritual concerns?”
“No, I am good.”
The daughter explained that Kenneth had left his church a long time ago, but she and her family were still devout Catholics. Religious and spiritual differences are common among the patient and their family. Because the end-of-life period sparks existential questioning for everyone, chaplains provide emotional support for people of all different cultural and faith backgrounds including agnostic or atheist. Their presence and openness can be profoundly healing for the patient and the family.
Chaplains can help the patient or the caregiver connect to their religion or sense of spirituality if that is important to them.
They help the patient or family process the mysteries beyond this life.
They can help locate a spiritual leader in the loved one’s religious community to facilitate a meeting or ritual.
They may be able to perform a bedside ritual, prayers, and blessings.
They educate the team about the patient’s religion and beliefs.
Patients who do not have a religious practice, like Kenneth, often refuse to see the chaplain. When someone is dying, the emotional implications are huge; a chaplain may be the perfect person to process any existential concerns with the patient regardless of their spiritual beliefs which can mitigate future anxiety or agitation.
Volunteers
Most hospices are not utilizing volunteers during Covid, but once reinstated, inquire about these lovely humans. They can come to the house four hours a week to relieve the caregiver. They cannot administer medications, but they can sit with the patient, provide social and emotional support, and provide a necessary break for the caregiver. They are essential eyes and ears for the team to understand how the patient and family are doing.
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When I left the home, Kenneth had his arm around one of the sticky children as they all watched Breaking Bad, his favorite show. I said my goodbyes as the daughter walked me out. “It’s a lot, but you got this. Please call us anytime,” I said. She did look more relieved than when I first arrived.
Because hospice often happens quickly and in a crisis, most caregivers' heads are still spinning after the first two weeks, and they have yet to understand the wealth of resources available. The sooner you are aware of these resources, the easier this process will be for you. Please use the team.
Blessings.
*Writer’s note: Because of privacy laws, the subject of this story is not an actual patient, but a story that is inspired by many many patients and scenarios over the years.