One of the most difficult decisions a caregiver will have to make is realizing it is time for choosing hospice care for your loved one. In my book, One Caregiver’s Journey, I describe the personal challenges I had, accepting that my mother was nearing the end of her life. Although she was 102, it is never easy to let go of your mother.
Mom had been evaluated for hospice two times prior to being eligible for services. The first time my mother was evaluated by the hospice that was connected to a hospital, she sang to the nurse and talked for an hour. Obviously, she did not qualify. The home physician service recommended she be evaluated for hospice once her congestive heart condition made it more difficult for her to ambulate.
The hospice connected to this service sent an individual to evaluate mom. It was a lesson in how to be scammed. The young lady was not a nurse or medical professional and did not have anything identifying her with the entity, no badge. She was unable to explain who the members of the hospice team are and their roles. She proceeded to show me videos of former hospice patients, which I know is a violation of HIPPA regulations. I rejected this hospice provider, and I made a formal complaint to the director of that facility. Several months later, I contacted the local hospital-based hospice. The same nurse who initially came to my home and told me my mother did qualify did another intake exam. The intake nurse performed a full exam, asked numerous questions, and made a phone call to the entity administrator who approved the admission. In addition to being 102, and having congestive heart failure, the nurse detected an undiagnosed mass near her left armpit. My brother and had previously discussed options, and we opted for in-home hospice care. My mother passed away at home a month later.
The process for choosing hospice admission can be lengthy and complicated, or it can be patient and family-friendly. The nurse explained the hospice team’s role and who would be assigned to us. The team included a nurse, a social worker, and a spiritual advisor. I met with all of them separately and determined that because our parish priest was so close to my mother, I would not utilize the spiritual advisor. Although one nurse was determined to be the lead, the nursing team rotated between several nurses or who was on call when you needed assistance. This same team concept applies in a facility-based hospice unit. The social worker’s role is mainly to support and prepare the family for the end-of-life. The reading materials are very helpful…but I will warn that it does take some strength to begin reading.
Why choose in-home over facility-based hospice? The key difference between choosing hospice to be provided in the home or in a facility is caregiving. The facility setting is very much like that of a hospital. It is a family preference, and there is no right or wrong choice. Choosing hospice setting, a designated caregiver is responsible for maintaining and monitoring all information and providing all care. Hospice teams are available 24 hours a day to provide advice and may visit in person several times a week. In addition to necessary personal and hygiene supplies, the hospice will also supply hospital beds, wheelchairs, or other assistive devices as the patient may require. There is also a locked box of medications to be kept in the refrigerator, which are administered under the direction of a nurse. When your loved one passes, the facility takes note of all the remaining medications and disposes of them in a prescribed manner. They also retrieve the remaining supplies and assistive devices as an end process. In some cases, the social worker will wait with the family until the body is picked up by a mortuary. When a family chooses hospice services to be provided in a facility, the medications and supplies are monitored by the staff. The social worker is facility-based, and a patient may have their own spiritual advisor stop in to visit. The family receives the same attention and counseling as provided in the home. The base question might just be, where do you want your loved one to die?
In my book, One Caregiver’s Journey, I discuss the process for choosing a hospice. Signing the intake papers was a very difficult decision.
This was a period when I found myself journaling to maintain my stress levels. After my mother got sick on Mother’s Day evening, I was told she was “in transition.” That is a phrase to tell family her time to go to her eternal resting place was drawing near. For the next two weeks there was a steady stream of friends and relatives coming in and out to see her. She remained in bed, sometimes coherent, other times she was sleeping. I did not leave her at night, but slept on the bed next to her, listening to her breathe. Because my mother was 102, it was a vastly different experience for us. We were as ready to let her go to her eternal home as she was to get there. Mom lived a long and beautiful life and hospice made the end of her life very comfortable.
Hospice workers are truly remarkable. The evening after mom started to transition, she lay in a wet bed. I called the hospice for instructions on how to change a wet bed with someone in it. At midnight the hospice nurse on call arrived at my home to change the bed, make mom comfortable and provide instructions. How do you express gratitude for such kindness?
I am aware of people who do not have anything nice to say about hospice workers. There are allegations that they starve family members, that they do not help them regain mobility or that they over-medicate them.
To the naysayers, I will just say – read the literature hospice gives you. You will understand how end-of-life occurs within a body. Your loved ones are no longer hungry or thirsty, the medications make them comfortable and prevent sudden strokes from heavy breathing, and they do not have the strength to get up and walk.
I will always be grateful for the support these Angels of Mercy give to families. It takes a special kind of person to work in a hospice setting. If you find yourself having to choose between in-home and facility-based hospice services, just be sure you are engaged with the protocols and staff.