The term hospice refers to both a philosophy and an approach to caring for the terminally ill, and it often involves reducing pain and addressing the psychological and spiritual needs of the dying. Such care may take place in a hospital, a nursing home, or an individual’s home. – Clifford A. Pickover, Death and the Afterlife
Last year, I decided I would apply to be a hospice care volunteer and finally had the courage to follow through with it. But as I awaited my first assignment after completing my volunteer training, part of me regretted doing so. Just thinking about it made my insides coil into knots; I had no idea what to expect. I was trying to convince myself to tell the organization that I was not a good fit. What if I couldn’t handle it? What if I accidentally hurt a patient somehow, or what if they didn’t like me? What if I contracted an infection or disease?
I know these questions sound dramatic, but these were the thoughts that sent me into a morass of anxiety.
I’m so glad I took a risk. It’s been one of the best decisions I’ve ever made, easily, and one of most rewarding experiences I continue to have.
What do hospice volunteers do?
There are so many different roles a volunteer can take on when it comes to hospice care. There are volunteers who prepare meals for patients; there are volunteers who run errands, such as grocery shopping, for patients, or who transport them to their appointments; there are volunteers who are trained to comfort children who are on hospice care, and there are volunteers who work with primarily geriatric patients.
There are volunteers who provide care to one patient only; there are volunteers who help several patients at the same time. There are volunteers who are part of a pet team and bring their therapy animal to provide comfort to patients (something I hope to do one day!). There are even special volunteers called Eleventh Hour Companions who keep vigil with a patient during their last hours.
I volunteer at a PCU*, or a Palliative Care Unit, a center or large home that has been converted to house several patients at a time. PCUs are generally used for respite care. Perhaps family or the primary caregiver had to go out of town or needs a break. Or perhaps the patient needs to get their pain management under control, or had a setback that they need more intensive, round the clock care for. Some patients are at a PCU for a few days or weeks, and others are there for a few months. PCUs can and sometimes serve as the place where patients spend their final days and hours. In hospice care, the term that is most often used is ‘end of life’ or ‘actively dying.’ Their loved ones might not feel comfortable with them dying at home or do not want to be alone when their loved one dies. Or, in some cases, the patient has no other family near them or no family left to be with them. These patients break my heart! But I’m so glad that they’re at the PCU instead of being alone.
How was your first day of volunteering?
My first day volunteering was a whirlwind. I helped the Certified Nursing Assistants (CNAs) with any tasks they needed to do, like repositioning patients if they required it or helping to dress patients if they needed help; I watched movies with patients in the living room, took out the trash and learned where to take out the linens, cleaned the kitchen, and helped prepare and serve meals. My four hour shift flew by and I was amazed that I’d done pretty well for my first time and had managed to keep our patients safe and comfortable. My favorite discovery was learning that I didn’t have to run to a nurse when I needed his/her help; I could just press a button when I was in a patient’s room or in a bathroom.
What does a normal ‘shift’ look like?
Providing patients with comfort or entertainment is my primary job. I also help with household chores around the PCU, along with anything else that a nurse or CNA asks of me. Sometimes I’m in situations where I have to make very quick decisions about the best course of action; other times, it’s just thinking about what extra thing I can do to make a patient’s experience – or their family’s experience – better.
How do you make patients feel more comfortable?
Sometimes a patient can communicate with me via verbal language that they need something or have pain, but other times, depending on a patient’s condition or if they are end of life, I rely on body language cues or watch for visible signs of agitation or frustration. If a patient has some of their limbs contorted or their neck looks strained, I might ask if I can adjust their bed, ask them if they’d like to stretch out their legs, or give them more pillows to support their back. I always ask a patient if they’d like something before I do it. If they seem extremely agitated or upset, then I will go straight to a Nurse and he/she will provide care for them. Usually I try to assess what I can do for them on my own first, but I never hesitate to ask for help if a patient requires more.
While volunteers provide comfort care, they cannot provide medical care, so that is the clear distinction between a volunteer and a medical professional. If a patient is requesting medicine, then I just go directly to their Nurse. But if a patient is, say, requesting a sundae instead of dinner, or would like their hair brushed or their nails painted, then that is definitely something that I can do 🙂 Sometimes it’s just as simple as sitting next to a patient while they’re dozing on-and-off or holding their hand as they watch tv. Just having a person there if they need it can be very comforting.
The unofficial motto where I volunteer is ‘do what the patient wants’ (as long as it keeps them and you safe!).
Is it hard to deal with the loss of hospice patients?
One of the first patient losses that really hit me was a patient I’ll call Margaret**.
Margaret always had a glimmer of mischief in her eye. She really liked to hold my hand when she watched tv or if we were having a chat, and every time I saw her, she was always happy to see me. She quickly became near and dear to my heart.
One time when I was visiting Margaret, I noticed that she wasn’t as chatty as normal. She also let me help her eat, which was something she’d never allowed me to do. Part of me was afraid that she was declining; she had always really valued her independence. Unfortunately I was right, and it would be the last time I saw her.
I know that doctors and nurses, especially those working in hospice, experience it all the time, but I think when a certain patient makes a big impact on you, it’s hard to shake their loss. You’re losing a friend who you spent time with, who you shared laughs with, and who you supported during some of their more painful or upsetting moments. I take comfort in the fact that I was there to help make their last hours or days or even weeks a little better, and that I was able to help them keep their dignity as they neared death.
I’ve always enjoyed writing, and while I do believe it’s a calling for me, I feel that hospice care is a calling, too. In another life I would have been a hospice nurse, I think, but I really cherish my role as a volunteer. It’s something that I hope to continue doing for as long as I can. And as part of the ‘millennial’ (I loathe the word but if that’s what they’re calling us) generation, I believe we will need to take on a more active role in hospice care, especially as the majority of our population – including our parents – continue to age.
Have you been thinking of starting your journey as a hospice volunteer? If you have any questions about volunteering, you can let me know in the comments and I will do my best to answer them!
*There are many different PCUs and types of PCUs. I will not specify the details of mine to ensure confidentiality.
**To protect their identity, this name is not their real name. Other details I mention have also been modified so that this patient cannot be identified under any circumstances.
Hello Patricia! Your article perfectly described a hospice volunteer’s first experience and was clear, concise and displayed authentic caring. My volunteer experience was not hospice but at Children’s Hospital and I did get close to a few children who died. I will always remember them and the time I spent with them: One little boy who had a heart condition that was not curable. I kept him occupied as he could only have a little bit of water every half hour and he was thirsty.
Another little girl with Cystic Fibrosis whose mom let me come in an say good bye to her. Her name was Emily and she was 8 years old. She was mad that she was dying. She did not want to go. I touched her forehead that was hot and moist and she would not look at me. We had played many times together. I kissed her and left in tears. Her mom got in bed with her until she passed. Lots of memories and what lessons I learned. Good for you Patricia for your work!
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Patricia, what do I say to someone who is actively dying when they tell me they’re afraid? My natural inclination is to respond with “I know.” But that doesn’t feel like it is reassuring or helpful at all.
This is a hard question and I don’t think I have a ‘correct’ answer. I think acknowledging and validating their fear is the best thing you can do. Perhaps saying something like, I know you’re afraid, but I’m going to be here with you and see you through your journey, can be comforting, just knowing that someone else is going to be beside them who won’t abandon them. I would also point you to http://www.orderofthegooddeath.com which has so many amazing resources and you might find some helpful articles there on this topic.