When I was growing up I had never heard of hospice. When I was in nursing school it was mentioned only briefly. I didn’t learn anything about hospice until I started my second real home care job. I learned a couple of important things:
- This patient is definitely not getting better
- Never call 911
- Try not to talk about it
Unfortunately, I didn’t really have any direction and these were just things that I figured out on my own (obviously). After a few years the agency I was with decided they wanted to open their own hospice. This was great because they hired people to train the staff and all of a sudden I had an expert at my fingertips.
I volunteered for extra training and I had the opportunity to learn more about the attitude of hospice. Sheila was the instructor and I really liked her. I liked how genuine she was and I felt her passion when she was teaching me things. She tried to teach me how to talk less and listen more. It was a shock when she told me that, and I am still struggling with it.
I still didn’t have a great understanding of what hospice was and why it was so great, but I definitely had gained some insight from Sheila.
When I started teaching classes to home health aides for orientation and inservices, hospice was one of the topics. It was in these classes that I started to perfect my “Why I love hospice” speech. I know Sheila told me to stop giving speeches but this was a really good one.
What is hospice? Hospice is an insurance benefit. In order to be eligible to get unemployment, you have to qualify. In order to get disability, you have to qualify. Hospice is an insurance benefit, like other insurance benefits you have to qualify for the benefit. There has to be a doctor that “signs off” on your medical needs in order for you to receive the insurance benefit. In order to qualify for hospice you have to have a doctor sign a paper that says; if your disease runs its normal course your life expectancy is six months or less. You agree to stop receiving curative treatments and not use 911 or the emergency room for treatment. Hospice is a BENEFIT. You get medications, medical supplies, 24 hour nursing support, weekly home health aide hours, access to clergy, therapists and volunteers. There are people who will read to you, sing to you and paint with you. It is interdisciplinary. If you qualify for hospice, you qualify for all of the benefits associated with it. It does not mean that you are somehow hastening death, or happy with the impending death. This we cannot control. What can we control? Pain, comfort and dignity. When you deal with hospice, you are dealing with experts. Yes, experts in “end of life”, experts in death. What a blessing to have a group of professionals who are experts in dealing with all the issues at this crucial time. If you have a problem with your heart, you see a heart specialist. If you have a problem with your lungs, you see a lung specialist. That is all hospice is. Death speacialists. And we, as the caregivers, have an awesome responsibility to provide guidance and support during this terrible time. Because it is probably the family’s first experience with hospice, the family looks to the caregiver for reassurance and support. Don’t refuse to take a hospice case because it is “hard” or “sad”. Be honored that you are invited into this family’s life during this very difficult time.
I often get choked up when I give this speech, and I have given it many, many times. I truly believe that caring for a hospice patient is an gift. It is a gift to the patient, and it is a gift to the caregiver. A couple of weeks ago I was taking care of a patient who was recently admitted to hospice. After we were finished discussing their services I looked at the patient and said, “Do you want me to cut your nails?” The wife emphatically said, “YES!” I was surprised that she wouldn’t do it herself, and I had never cut another adult’s nails in my life, but I realized that I was being given an opportunity to really care for this patient. His nails were gross. When I was done, they looked great.
I come from a long line of strong-opinioned, strong-willed, somewhat pushy women. These days I mostly tell it like it is. I try to be totally honest with my patients without hurting their feelings.
I have always tried to be honest with my children. I have learned (from my mother) to answer all questions matter of factly and in a way that the child will best understand. In my almost 19 years as a parent I have answered questions about sex, babies, circumcision, masturbation, viagra, pregnancy, abortion, relationships, abuse, pride in one’s body, eating healthy, breast milk, child birth, cesarian sections, death, burial…you get my point.
Recently my 18 year old daughter told me an acquaintance of hers has had a reoccurrence of his cancer. She told me that he is on hospice. She asked me if he has a chance of being ok. I told her no.
At the home care company where I work I have treated more hospice patients in the past 3 months than I have in the past three years. I learn something new from each patient.
One daughter told me that all she wants is to get to talk to her father before he passes. I made sure to share that with the nurses caring for the patient and they knew to wake the daughter if the patient was having a moment of lucidity.
A wife recently told me that her husband just wants to die. I made sure to share that with the nurses caring for the patient and they knew to give the maximum medications that can be safely administered as per the doctor’s orders.
A son shared with me that his mother needs to be in charge. I made sure to share that with the nurses caring for the patient and they knew to check with the patient regarding all care needs and issues.
These, and many other, patients taught me that each life (and death) is different. I always ask the client or their family member, “What are your priorities for care?”. I also ask them to let me know if there is anything else I can help them with, or do anything else for them. Inevitably, I am given the same answer.
“Please make them better”.
If only I could.
Lessons I’ve Learned:
- It sucks, but death is a part life.
- Take the services that are available to you.
- Don’t be afraid of the truth.