Caregiving Case Studies: Hospice Part I – End-of-Life Care in a Hospice Facility

Sun setting over the ocean

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’ll be devoting two posts to hospice to cover the range of experiences more thoroughly.

 In this post, we’ll focus on Jennifer’s Mom’s experience in a hospice facility and provide four takeaways for caregivers, plus a note for well-meaning visitors.

Jennifer’s Mom

 During the summer of 2018, Jennifer’s mother fell ill rather suddenly and received an advanced lung cancer diagnosis. She wanted to stay at home as long as possible and the family wanted to grant her that wish. This quickly became challenging for two reasons:

  • Her medical condition was declining rapidly and her needs were growing day by day.

  • She was still considering active medical treatment. As a result, she didn’t qualify for hospice and the family had to coordinate home care on their own.

The patchwork of home health services was complex – Jennifer’s family spent a significant amount of time and effort researching and setting up visiting nurses, occupational therapy, home health aides, and various types of medical equipment and supplies. They learned how to use portable oxygen tanks and a home oxygen machine to help Jennifer’s Mom breathe more easily.

Those services took time to activate because there was less urgency than there would have been for a hospice patient.  Because she was at home and didn’t have a referral to hospice, Jennifer’s mom only had professional help a few hours a day and it was completely inadequate to keep the family out of reactionary mode as her needs changed rapidly.  The family was not able to meet her evolving needs 24x7 at home.  They felt this compromised her comfort and care and affected their time with her in her last days.  The situation was further complicated by the fact that Jennifer’s Dad was also suffering from cancer.  He had been successful in fighting his cancer over a long period of time and encouraged his wife to do whatever was necessary to try to get better herself.

Takeaway #1: Patients cannot be seeking curative treatment or management of the disease to extend life and get a referral to hospice

It can be a real hurdle and mindset shift for patients and their family members to move from active treatment (fighting the condition to recover or live longer) to hospice (accepting that death is near). Hospice patients receive comfort care, but not curative treatments or treatments that will prolong life. With that said, if Jennifer’s Mom had initially opted for home hospice care, the hospice provider would have coordinated the care team and supplies and they would have been available more quickly than they were without the hospice designation (overnight v. several days’ wait). Due to her age, these services would have been paid for by Medicare.

When the family went to meet with the oncologist to discuss treatment, Jennifer’s Mom’s condition had deteriorated to a stage where active treatment was no longer an option. The oncologist referred them to a palliative care doctor who recommended hospice. The palliative care specialist indicated that hospice care could be provided at home or in a hospice facility.

 After having experienced several rough nights at home, the family agreed that a hospice facility was the right option. While the palliative care team searched for an open hospice bed, Jennifer’s Mom was admitted to the hospital. It quickly became clear that the inpatient hospital setting wasn’t aligned with what Jennifer’s Mom and family wanted for her care:

  • The orderly who brought Jennifer’s Mom from the clinic up to her hospital room told her that they'd have her better in no time.  Jennifer had to tell him that she was near death and heading to hospice - that message surprisingly hadn't been conveyed and wasn't on her medical chart.  

  •  The hospital clinical team was still focused on care to prolong Jennifer’s mom’s life.  She was connected to multiple monitors and the physicians wanted to change her medications with the intent of extending life.

  •  The environment was not designed for patient comfort. By the time Jennifer’s Mom was admitted, she had missed lunch, so no food was available. The intercom was loud and intrusive. The room itself was cramped, so the family couldn’t sit comfortably. In addition, it was freezing cold on a hot summer day.

As Jennifer noted, “In short, the hospital setting was a disaster. It was everything we did not want for my mother and nothing that we wanted.”

Takeaway #2: There may be a wait for a bed in a hospice facility

If the patient winds up in a more intensive/acute care setting, 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. 

Fortunately, the hospital social worker was a godsend. She stayed late Friday afternoon to find a hospice bed for Jennifer’s Mom. She found a brand-new hospice facility nearby with available beds. Although a hospice case worker had to evaluate Jennifer’s Mom’s condition, that happened late Friday afternoon. The hospice case worker noted that their facility provided two levels of hospice coverage:

  • For less acute patients, this particular hospice facility required upfront payment for a full month of care. This was several thousand dollars and could be cost-prohibitive to many patients and families.

  • For more acute patients, all care is covered by Medicare. More acute patients typically require pain management and breathing assistance. Jennifer’s Mom fell into this category of patient.

Jennifer’s Mom was transferred by ambulance from the hospital to the hospice facility. Jennifer’s Dad rode with her in the ambulance so she wouldn’t be alone.

Takeaway #3: Insurance coverage for hospice services varies depending on the patient’s insurance coverage (private, Medicare, Medicaid) and health status

Jennifer’s family learned that there are two levels of hospice care - a lower level of care for less acute patients with limited time to live and a higher level of care for patients actively needing assistance with pain management and breathing assistance near the end of life.  Inpatient hospice services for patients requiring less care was quite expensive and required payment upfront.  The higher level of care was fully paid by Medicare.

Jennifer’s Mom had a large, quiet, private room with dimmable lights. There were no loud monitors or intercoms and the room temperature could be adjusted. A wall of windows looked out over woods and a reservoir. The room had a hospital bed, two couches that converted to beds, a recliner, and several other chairs for family and visitors. In addition, there was a private bathroom and a refrigerator in the room.

Outside the room, there was a common kitchen area and many different places for family and friends to gather. The hospice facility offered a chaplain, social worker, and music therapy which Jennifer’s family used. Additional services (e.g., massage therapy) were not available over the holiday weekend that Jennifer’s family was at the hospice.  Nurses or CNAs came in every several hours to check on Jennifer’s Mom and they were available at any time of the day or night. A physician visited once a day. Jennifer commented, “The hospice facility was just what we needed when we didn’t know what my Mom or what we as a family needed.”

 Jennifer’s Mom was taken off all of her previous medications, although they kept her on oxygen for breathing comfort.  There was hot and cold food available whenever she wanted it (which wasn't often).  The family stayed 24/7 with Jennifer’s Mom and the facility provided bedding, towels and toiletries for them. 

 The hospice team called Jennifer’s Mom by name, even when she was not awake or conscious. She had dignity in her final days and hours. The team supported the family as Jennifer’s Mom passed away in the type of environment that she wanted.

Takeaway #4: Hospice can often provide all sorts of supportive care for the patient and caregivers

Examples include chaplains, social workers, assistance in explaining death/dying to children, music therapy, massage therapy for patients and caregivers, and grief support for family members for up to a year after the death.

A Note About Visiting Patients in Hospice…

If your family member is in a hospice facility, tell the front desk what your wishes are regarding visitors. You may also want to post these on your family member’s door.

Jennifer reflected, “We had multiple groups of people show up unannounced in my mom's final days and hours, when she was well beyond being able to receive visits.  It was very stressful and caused a lot of tension to have to scramble to the door to prevent them from entering her room, and then have to visit with/entertain these well-meaning people elsewhere in the facility when we just wanted to be with our mom, rest or attend to the myriad of details that had to be managed.”

To be most supportive, visitors should contact family members before visiting a hospice patient. If you do decide to visit a hospice patient, consider limiting your stay to 30 minutes.

Next week, in the second post in this series, we’ll explore what the hospice experience can look like in a skilled nursing facility, as well as when the patient opts for hospice services at home

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