By Aliza Becker, Coordinator, Community Outreach and Support, Jewish Community Services

While the main constant in end-of-life care is its unpredictability, I share my family’s recent and ongoing journey in the hope it will help prepare others facing a similar situation.

In mid-November, my mother fractured her shoulder from a fall following a stroke. After a short hospitalization, she was sent to a rehab facility where her condition rapidly deteriorated, her food and liquid intake diminishing by the day. She fell sound asleep after her daily physical and occupational therapy sessions, and on the rare occasion when she spoke, it was mostly to ask when she could go home. My family was devastated.  

In light of my mother’s worsening condition, the attending nurse recommended moving her to home hospice. Wanting to fulfill her yearning to be home, we agreed without knowing what it would entail.

I called a hospice nurse friend for counsel. She explained that a hospice assessment would be conducted after two physicians agreed that the patient had a terminal disease with an anticipated lifespan of six months or less, if the disease took its normal course. However, each hospice agency conducts its own assessment to make sure the patient meets admission guidelines. That includes reviewing the patient’s records, meeting with the family or caregiver and visiting with the patient. 

My friend advised us to screen several hospice providers to find one that best suited our needs. Medicare provides a list of questions you might ask depending on the patient’s needs and desires. Unlike the metropolitan Chicago area, which has dozens of providers that make it the most competitive medical hospice care market in the country, the rural area where my parents live is served by only one hospice agency. 

At our assessment interview, the intake nurse from the hospice agency reviewed hospice care basics. Hospice protocol provides a specialized care team that provides the patient comfort and quality of life rather than life-prolonging treatments that can cause additional pain and suffering. It allows the patient to live as normally as possible and is offered wherever the patient lives, generally in-home, and the patient can opt to withdraw at any time. Hospice practice specializes in symptom management, not illness diagnosis or cure, and in providing emotional, social and spiritual support for patients and their families. Hospice care generally aims to treat symptoms like pain, shortness of breath and nausea rather than the underlying disease.  

Our hospice team would serve both my mother and our family and included medical personnel and a social worker. We had the option to request a home health aide up to three times a week for an hour at a time; a Jewish chaplain (nondenominational if we preferred); a death doula for emotional and physical support, education about the dying process, and guidance around grieving and a music therapist. The agency also offered bereavement services for 13 months after the patient’s death, including an in-person grief support group for family members. 

By law, a hospice agency must offer four levels of care. We would receive the first level: routine home care where the patient is relatively stable. The other levels are continuous home care when the patient needs short-term management for symptoms like excessive pain; general in-patient care when the patient is referred to a hospital; and respite care to give the caregiver(s) up to a five-day break. A hospice patient may experience all four levels or just one, depending on their needs and wishes. 

Medicare, Medicaid and private health insurance generally cover the cost of hospice care when medically indicated. The hospice intake nurse told us that hospice would provide and deliver medications — all of them focused on comfort — plus healthcare-related equipment, including a hospital bed and wheelchair, plus disposables such as bed pads. This would all be free of charge.

One significant expense that is not covered is homemaker services, or aides who help with daily care needs such as dressing, bathing and administering medication. We assumed this would be covered by my mother’s long-term care insurance, but when we reviewed the policy, we discovered there was a 90-day window before the insurance would become effective. To fill this gap, we hired homemaker aides through a certified provider who operated out of my parents’ independent living facility. In the Chicago area, CJE SeniorLife (formerly Council for the Jewish Elderly) provides a similar role. I wish we had read her policy years ago.

We sometimes had difficulty getting coverage on weekends and holidays, so the weekday aide reviewed her daily routine with me and I documented and shared it with other family members so we could cover vacancies. I also put out a whiteboard for the weekday and weekend aides to use for communicating with each other.

So far, things have gone remarkably well, and my mother has made significant strides in her mobility. In fact, she has done so well overall that her hospice wasn’t recertified. We don’t know what the future holds, but as I write this, she is continuing to show small improvements and is eager to hold onto a semblance of her normal life as long as possible. 

JCFS Chicago provides both chaplaincy services and grief support online and in-person to complement hospice services. For more information, contact Leah Shefsky at LeahShefsky@JCFS.org  or 847.745.5404.