[ photo by Josh Appel]

End of life care at home, acute rehab can get you there; a patient story.

We want to go home but don’t know how to take care of him when he gets there, is a concern I hear from family members of patients.

I have many families that stand out in my mind during my time in acute inpatient rehabilitation. This particular family was a very close-knit family. The head of this family, let’s call him Mark, had been battling brain cancer for the past two years. Despite surgery for removal of the tumor, radiation therapy, and then chemotherapy, his cancer had returned. His oncology team had recommended end of life care or hospice care for him. It was not an easy decision for Mark or his family. He had fought this cancer hard, and he did not want to just “give up.”

Any further treatments, however, would not provide a cure. His original tumor had left him with some mild left sided weakness, and his ongoing chemotherapy treatments had left him with significant debility. He had been seen by PT and OT. He was requiring moderate assist for his transfers from the bed to the wheelchair and to the commode. His mobility was limited to his wheelchair only. Once the decision was made by Mark and his family to enroll in hospice, the family made it clear they were determined to bring him home. 

Hospice, end of life on your terms.

The decision to enroll in hospice is rarely an easy decision to make. Once the decision is made, however, the focus moves from quantity of life to quality of life. Despite the focus being different, hospice is much like rehabilitation in that it is a team approach. A hospice team provides so much for the patient and their loved ones.

That patient will get expert level pain control and comfort measures from the nurses and doctors. They also get someone to answer those questions of what to expect in your loved one’s final days and what the dying process might be like. There is spiritual support available from the chaplain for the patient and the family members. Often, there are volunteers within the group that provide respite care, which is just someone to come and sit with the patient to allow the family members a break. Hospice care provides so much for the family that cannot be provided with any other team.

End of life care can occur in multiple locations.

There is one common misconception about end of life care that I have often encountered, however. That is where hospice care can occur. There are inpatient hospice facilities where hospice services are the only services provided. Families can elect for their loved ones to be evaluated by a hospice nurse or physician to determine if the patient would qualify for admission there.

They can also receive inpatient end of life care in a nursing home. In these cases, the staff at the nursing home is providing the majority of the care with the guidance of the hospice team, with the hospice nurse or physician being on call at all times for any questions. The patient is still visited regularly by the hospice nurse and even chaplain. These stays are generally covered by Medicare A.

End of life care can also occur at home. This is also covered by Medicare. The hospice team does not provide 24/7 care, however, there is always someone on call from the hospice team to answer any questions the family members may have. Once someone has qualified for hospice, they will generally require 24/7 care, and this can be quite a burden on the family. This is often why many patients and family members elect to do some form of inpatient hospice. 

End of life care decision by Mark and his family.

Let’s get back to Mark and his family. They were a large family and were able to figure out how one of them could be at home with Mark at all times. Their concern, however, was that they did not know how to safely move him around in his bed and to safely help him to transfer in and out of bed. They wanted him to be able to spend some time outside in his final days and were worried they wouldn’t be able to do this for him without the knowledge of how to safely move him around.

This is when the idea of acute rehabilitation came in to play. I admitted him to my acute rehabilitation unit with the goal of training the family how to perform his basic ADLs and how to safely transfer him in and out of the bed to his wheelchair. We knew it would be a short stay, and that is what he and his family wanted. His days were numbered, and he wanted to be at home with his family for as much of that time as possible.

Defining end of life care goals.

One of the essential components of staying in acute rehabilitation is showing an improvement in the FIM scores. I knew he would not show much, if any, improvement in his scores, so I knew his stay would be short. That was okay because our goals for him were geared towards family training. His family was a quick study. He spent five days in acute rehab with the family members taking turns attending all of his PT and OT sessions, making sure they knew how to safely help him with the basic ADLs. Once he was ready to discharge, he was formally enrolled in hospice, and the hospice team made the recommendations for his discharge medications. 

End of life care at home.

My rehabilitation team received a card from his wife a few weeks later to thank us for making it possible for him to receive that short stay in rehab. In his final days at home, he was seen by all those in his family that loved him. He spent time out in his yard, one of his favorite places on Earth, and he was able to pass from this world with his family members by his side.

I tell you this story of Mark not just because he and his family left such a fond memory for me but because I want to provide a bit of education on end of life care, what it entails and the available options for those family members that want to bring their loved ones home for their final days.   

Please contact me or leave a comment if you have a question about how acute rehab can facilitate end of life care at home.

© 2020 Jessica Kluetz, DO