Caregiving Case Studies: Hospice Part II – End-of-Life Care in Acute Settings and at Home

A bird soaring in a sunny sky with clouds

One of the challenging aspects of senior caregiving is that every situation is unique. As a result, it’s impossible to prescribe a “one size fits all” approach. Caregiving Case Study posts are designed to give readers insight into how different families have approached eldercare and the lessons they’ve learned.

Jennifer Martin, management consultant and healthcare strategist, recently shared her family’s experiences with hospice with me. Even in end of life situations, she found that navigating the hospice landscape may be challenging depending on each patient’s unique situation. We’re devoting two posts to hospice to cover the range of experiences more thoroughly. In this second post, we’ll focus on Jennifer’s mother-in-law’s and sister-in-law’s experiences.

Jennifer’s Mother-in-Law: End-of-Life Care in an Acute Setting

Jennifer’s mother-in-law had been suffering from Alzheimer’s disease and had lived in a memory care unit for about 18 months. In the spring of 2018, her medical team recommended that she move to hospice. Since no hospice beds were available in her rural area in the Midwest, she was transferred to a skilled nursing unit in her continuum of care facility.

 After around 10 days, Jennifer’s mother-in-law passed away, while still waiting for a hospice bed. Fortunately, her family was able to stay with her 24/7. However, she still received the standard medical care that comes with skilled nursing.

Takeaway 1: Depending on geography and other circumstances, hospice facility beds may be limited.

As a result, your family member may need to accept and plan for end-of-life care in a more acute setting. As noted in the prior blog post, it is imperative to have a DNR/MOLST/POLST signed (requirements vary by state), so the facility is not obligated to resuscitate your family member or provide treatment that is not desired or necessarily appropriate.

Jennifer’s Sister-in-Law: Hospice Care at Home

 Jennifer’s sister-in-law, who was battling cancer, decided with her adult daughters that she wanted to pass away at home. As a result, they elected for home hospice care. The local hospice service provided all of the durable medical equipment and medical supplies that were needed, such as a hospital bed, commode, and pain medications.

 Hospice nurses came to Jennifer’s sister-in-law’s home periodically and checked on her. They were also available by phone if she or her daughters had questions or concerns. Her daughters provided 24x7 coverage/companionship for her in her last days.  

Takeaway 2: When considering home hospice vs. a hospice facility, determine whether family and friends can provide the bulk of the care coverage. 

For in home hospice, nursing staff and other medical professionals check on the patient periodically, but are not at the patient’s home 24x7.  Depending on the patient’s condition, family members or friends must be available to administer any medications, assist with toileting needs and other transfers, learn how to use any medical equipment (e.g., oxygen, Hoyer lifts).  Inpatient hospice facilities have professionals available 24x7 to assist with care, freeing family and friends to spend this time differently with their loved one.

Jennifer’s sister-in-law passed away peacefully at home, as she had wished, in the early morning hours. One downside of their experience with home hospice is that it took several hours for the hospice to coordinate with the funeral home to remove her body from her home. This caused some real stress for her daughters. In the days following Jennifer’s sister-in-law’s death, the hospice came and picked up all of the medical supplies and equipment.

 Discussing and managing end-of-life issues are definitely challenging. However, having open dialogue on these topics before a time of crisis can be helpful. Both I and Jennifer’s family hope that these two hospice-focused blog posts have provided valuable insights for other caregivers who may be facing these types of situations.