Hospice Nursing - How Could I Not?

makeitwork, BSN, RN

I'm not always sure how hospice patients are assigned to nurses. I want to believe that we are given a specific geographic area and we will have the patients living in those areas. Less drive time equals more patient contact time (and of course the company won't have to pay as much mileage reimbursement). My supervisor asked if I would be comfortable having a Down syndrome patient added to my caseload. No one could recall the last time the agency had a Down syndrome patient on service so we didn't have anyone with recent experience to deal with issues specific to Down's patients. It was nice of my supervisor to ask, the patient lives a little bit out of my area, but, she knows I want patients that push me to learn.

The hospice admission process was completed by another nurse. Much education is provided to patients and families at the admit visit and they often feel overwhelmed. I visit the next day which helps calm down the information overload anxiety households often feel. Hospice nurses can answer new questions and address concerns at this follow-up visit.

Somehow, I have an immediate connection with this household. The family consisted of a wonderful retired couple whose own children were now adults and out of the house. In addition to adopting someone else with Down syndrome, they assumed guardianship of my patient. They bring me freshly brewed tea. The couple provided me with literature about Down syndrome from which I learn a lot. I found out that people with Down syndrome age faster than people without Down's, those that live to age 50 and beyond are often considered geriatric and that Alzheimer's disease occurs at a higher rate in the Down's population than in the general population. This was certainly helpful to me as her hospice nurse because I can now approach care and anticipated symptom management needs pretty much based on the Alzheimer's disease diagnosis. She seemed otherwise healthy so when it was appropriate, I educated the family on the expected progression of decline.

This caring couple was very realistic as to why hospice is brought in to a home which certainly made my job easier. Please don't confuse being realistic about hospice for a loved one with giving up or being passionless. After seeking medical consultation for whatever disease process one may have, and undergoing possible treatments, there is a need to decide when to allow the body to follow the natural path it is on. Artificially keeping someone alive, after exhausting all treatment possibilities, with continuous mechanical and chemical assistance is just that-artificial.

My patient could not hold a conversation, but, she would usually respond with one-word answers. She had a wonderfully huge smile when I came to visit and, as I would leave, I got a frown and waving fingers on a hand that was raised less and less as the weeks passed.

For the first several months, our once-a-week visits consisted of my assessing the patient while that cup of tea was brewing. I would answer questions pertaining to whatever was searched about on the internet that week by her "mother" and about which vitamins and medications could be dropped from the daily pill-taking regimen. Eventually, the patient started eating less and sleeping more. Instead of walking 10-15 feet with someone just holding her hand, she began to need help transferring from her bed to her wheelchair and from her wheelchair to her seat on the couch. She stopped the one-word answers, the smiles got smaller and smaller. Fingers would still wave, but, the hand stayed on the arm of the couch. As symptoms increase, so do weekly nurse visits.

I had been coming to the home of this family for months and always enjoyed going there. Throughout their hospice experience the family expressed appreciation for the support the hospice team consistently provided. It got to where team members truly looked forward to visiting that home. To top it off, they had a couple of great dogs that would run up to welcome you as you came up the driveway.

On weekends and after business hours we rotate being the on-call nurse. An email is sent out the morning of the next day with a summary of what calls and visits were made. I knew it was inevitable. Checking the email on Monday morning I saw that she had died. Of course I am always worried about calmness and peacefulness at the time of death for all of our patients, after all, that is one reason we do what we do. I read that she died quietly in her sleep so that concern was alleviated. However, another concern developed. A few days after her death I began questioning if I had what it takes to continue getting close to my patients and their families and then never seeing them again.

Birth and death. You remember when your kids are born. Doctor or mid-wife, you remember that person and the surroundings. The same thing happens with death. If you ask a family member or friend that was involved in the caring of a loved one with a terminal illness, that was on hospice services, they will remember, good or bad, their hospice nurse. We can get intimate with a family in a matter of minutes. The care, education and physical and emotional support we are able to immediately provide sometimes gets sucked up in that initial hospice admission visit which can create an instant bond. As in all bonds, there are at least two parts.

Being a hospice nurse takes an energy that I am unable to describe. When people find out you are a hospice nurse, the usual response is, "How can you do that?" I would usually just say, "How could I not?" However, after supporting this beautiful family, I began to question if I could continue doing this job. I started looking at other nursing opportunities and found several that might get me back into an emotional balance.

In our rural county we don't have a local Sunday newspaper-Saturdays are when our weekend paper comes out. My Saturday routine is to get up earlier than I want to (because I just can't seem to sleep in anymore), make some coffee and bring the newspaper in to read. I do look at the obituaries. Although I am getting old, I'm not looking at the obits to see if friends my age are looking back at me. I look to see if I can learn something about my patient's lives, something that I may have been unaware of. Learning about their lives is one of the joys I get from being a hospice nurse. I also decided I was going to apply for a couple of those nursing opportunities after I was done with the paper.

I was taken aback as I saw that big smile flashing at me from the paper. When I think of obituaries, I consider them very brief summaries of what was important in a person's life. Their families, their work, their hobbies and where they lived and went to school all seem to be part of this condensed biography. As I read, I wasn't learning anything new about my Down's patient-the couple shared these things with me at our visits. I came to words that described an appreciation for our hospice agency which is always nice to see. I have read such words in obituaries before...I then froze with emotion as I read my name and their description of the effect I had on their family.

I am still a hospice nurse.

Hospice Nursing - How Could I Not?

About makeitwork, BSN, RN

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