Sunday, November 25, 2012

First Hospice Visit

"Volunteers ... can reap many gifts depending on how fully present they are during each visit, how empty they are are of any expectations or agenda, how capable they are of accepting the individual unconditionally and how comfortable they are simply sitting in the silence. So much can be communicated without words, and in fact, quite often a patient is too tired or too weak to talk. Just the presence of a caring companion at the bedside can convey enough serenity to bring comfort and ease some of the fear and loneliness of dying." -- Mary Jo Bennett, "When Autumn Comes: Creating Compassionate Care For the Dying," p. 100

I couldn't have asked for a better patient than "Janice" to initiate me as a hospice volunteer. I was filling in for Janice's regular volunteers, who were out of town for Thanksgiving. I was nervous as I entered the nursing home to see her; so much so that the Director of Nursing said to me, "You're out of breath. Were you running?" Janice is an elderly patient dying from cancer and has no surviving family. Fortunately, she rated her pain a 0 on a scale of 0-10.

When I got to her bedside, Janice was eating and said, "I'm so glad you're here. I was beginning to get lonely." That made me feel like whatever else happened during that two hour visit, me being there made a difference to the patient. I cut up her potatoes so she could eat them. Janice told me I looked like Bette Midler, and we talked about Thanksgiving in particular, cooking in general, the weather, flowers, and other sundry things. Janice expressed her appreciation for how nice the hospice I'm volunteering for has been to her. After 45 minutes, Janice apologized and told me she needed to take a nap because the medication she takes makes her sleepy. I told her she had nothing to apologize for, and that if she's tired, she should rest. Janice woke up a few times from her nap, always smiling when she realized I was still there. Twice, she apologized again for sleeping, and worried that I was bored. I told her I had books, an iPad, and knitting, so there was no chance of me being bored. I gently woke Janice up before I left to say goodbye and see if she needed help with anything before I left.

I learned three important lessons from my first hospice visit:

A. Being there really matters. Janice said that plainly when I got there, and then her face conveyed it every time she woke up from her nap and realized she wasn't alone. How cool it was to get home and read the above-quoted passage from "When Autumn Comes" (a must for hospice volunteers), which echoes this experience, especially in the last sentence.

B. Being silent is very hard. I found myself wanting to make small talk with Janice. I give myself a "B-" in that regard. I will need to work on letting the client always initiate conversation. This gives them control over whether they want to speak or not, and especially if they are actively dying, they might not want to talk. Second, keeping my mouth shut allows them to choose the topic they want to converse about. If I was going on about Thanksgiving turkey and Janice had really wanted to talk about her fears of dying, I would have precluded that by my chatter. On the other hand, if I had forced a conversation about death and Janice wasn't interested in talking about that with me, that's not cool either. I can tell that to be a good hospice volunteer, I will need to get very comfortable being silent. Bennett's excellent guide for hospice volunteers gives several suggestions for things to do to with a silent patient, including prayer, meditation, and gently stroking the patient's forehead or hair.

C. Leave earlier than I think I need to. I was rushed getting to the nursing home, and it stressed me out. It would have been better to be there 10 minutes early so I could have relaxed and better gathered myself before visiting the client.

Visiting Janice was a pleasure, and I look forward to many more assignments as a hospice volunteer. Truly, it felt like I was doing what I was meant to do.

Tuesday, November 13, 2012

Hospice Volunteer Training: Day Two

"Tears fall, but why am I crying? 
After all, I'm not afraid of dying. 
Don't I believe that there never is an end?" -- Iron Maiden, "Hallowed Be Thy Name"

Day two of hospice volunteer training covered the emotional and spiritual needs of the dying. I learned that only ten percent of us will die suddenly; the rest of us will have to deal with some protracted death. Hospice believes that this dying process can be a meaningful stage of one's life and endeavors to make it so. One of the biggest take-aways from my training is to get hospice involved early, so families can take advantage of all of the services they offer. If you wait until someone is "actively dying" (really nearing the end of life), they are not going to feel up to utilizing the chaplaincy, social work, and volunteer time that can make this journey a more pleasant one. For example, we had a panel of current hospice volunteers come speak to us. I was touched by a gentleman in his 70s who said, "I try to find the thing that the patient has lost and in some way bring it back to him." For example, one of his patients loved poker, but hadn't played in years. The volunteer started playing poker with him on his twice-weekly visits, and other men from the floor of the assisted living facility joined in! I was so moved by this man's dedication.

The hospice volunteer coordinators did an excellent job with this training, and provided us many relevant articles in our large binders. The section on the emotional needs of the dying was intense, but also informative. The most powerful article, to me, was written by a doctor who lost her six year-old, Liza, to cancer. It was a beautiful illustration of how hospice care could ease this girl's death for the patient and her family. The article goes into detail about how Liza wanted to die and how thoughtful hospice care enabled that . One of our training exercises was to brainstorm about our "ideal" deaths, inasmuch as there can be such a thing. None of us is getting out of here alive, and there is a 90 percent chance that you will not die suddenly, so it's worth putting time into thinking about this, and more importantly, sharing your preferences with your loved ones. Everyone agreed the first goal was to minimize pain. Beyond that, here are my wishes:

To die at home, in bed, surrounded by close family, my best friend, and my dog(s). I would like there to be candles lit, and I would not like music (not even my beloved Iron Maiden). I would like my sheets to be clean. I will definitely want some spiritual reconciliation near the end of my consciousness: saying the viduy (confession prayer) with a rabbi whom I like, and meeting with a meditation mentor or teacher.

Other people participating in the training said they wanted music, specifically Bruce Springsteen. Some people thought less about atmospherics and more about things like ensuring there would be no family drama during their deaths, and knowing that they will have helped their daughters plan their future weddings.

We talked a lot about how to conduct oneself on a visit, such as what to talk about and how to behave. We did role-playing where we acted out different scenarios, like a patient's brother asking you out (!) or having a patient ask, "Why is this happening to me?" Social workers talked extensively about preparing yourself mentally for entering a hospice patient's home and the importance of leaving your baggage out of the visit since they have enough problems. This is a good reminder for an over-sharer like me. They even recommended specific techniques to kind of clear yourself before you enter the home and enter into a mindful presence to be of maximum service on your visit. We also discussed the importance of self-care for volunteers since this is stressful work, and the importance of healthy boundaries. We were told many times to block caller ID on our phones when we call the patient or family and certainly not to bring any patients to our homes.

To try to cultivate empathy and drive home the hospice patient's experience, the trainer conducted an exercise in which we wrote the following on 16 sticky notes: your four most valuable possessions, the four most important people to you, the four roles you value most and the four activities you most enjoy. You then laid these stickies out in front of you, and the volunteer coordinator walked around and randomly took them away from you one by one and crumpled them up. The point was to drive home the reality that hospice patients lose all of those things. Many people were deeply moved by this exercise, and one volunteer even had nightmares about it and couldn't sleep last night. However, I found it a little cheesy. I kept thinking, "My role as a wife wouldn't go away if I were in hospice, nor would I lose my wedding ring if I were dying." As for losing the ability to perform activities I enjoy, because of my debility from my serious Lyme Disease infection, I did lose the ability to do nearly all of my favorite activities, and others that aren't favorites but are critical to independence, like driving. Even though this sticky note exercise did not resonate with me, I still appreciate its message that people dying are rapidly losing control of things they hold dear.

In addition to discussing emotional needs of the dying, the second focus of the day was on their spiritual needs. One of the two hospice chaplains came and explained his job to the volunteers. He was really cool, and explained that he takes a very broad view of spirituality, which he explains to patients. For that reason, he ends up visiting with many people whom do not think of themselves as religious. Most people feel connected to something bigger than themselves, even "just" being part of a community. To this rabbi, that connection is the essence of spirituality. The rabbi brought a lot of insight into how to speak to the dying. I thought it was interesting that he often ends up working with people who are already very involved in their church or synagogue, because their own clergy people are overextended or because their minister or rabbi said, "You should view me as a generalist, and the hospice chaplain as the death specialist. Work with him, too."

Last but not least, on day two of training, we got our mandatory tuberculosis test. Ouch! It was a very long and emotionally intense day, but I felt like it did a lot to get me prepared to be a hospice volunteer.