What is it like to be a hospice volunteer?
December 30, 2010 10:29 PM   Subscribe

What is it like to be a hospice volunteer?

I have some pragmatic questions, but I'd imagine the volunteer coordinator could answer them, things like what kind of time it takes to really be useful to a hospice organization. Information like that is welcome, but not really what I came here to ask about.

What sort of motivations should I have to do something like this? To be honest, I'm interested in dying, in how people live during the last months, weeks, and days of their lives. Death isn't familiar to me. I've never been with anyone I was close to at death. I imagine the end of life is probably just as mundane as the rest of it for many, but wonder if interacting with someone then might be more profound.

I don't feel I have many meaningful connections to others in my life these days. I'd like to be depended on, to be helpful to someone.

Is it draining? Are there any characteristics that predict how someone will react to this kind of work?

What would I typically do?

I'm 22, male, irreligious, and a student.
posted by anonymous to Human Relations (22 answers total) 16 users marked this as a favorite
I watched my father die in a hospice. I don't mean in the abstract sense; I mean in the literal right before my eyes sense. It was the worst moment of my life, tempered only by the fast that he had been in tremendous discomfort in the weeks and days leading up to that point. The nurses at the hospice were angels and, as we sat and talked while waiting for the mortuary guys to arrive, it became clear that they all felt a calling to help people. If somebody had been there because they wanted to see people near death, or even watch somebody die, I would have been very, very offended.

I would encourage you to think about what motivations you think are appropriate.
posted by LastOfHisKind at 11:33 PM on December 30, 2010 [9 favorites]

My mom was a hospice volunteer. She was assigned a person, who she would visit. I think it was maybe twice a week. I don't think she found it draining, but as an older person she had a fair amount of experience with death. Here are some blogs about hospice and hospice volunteering.
posted by ClaudiaCenter at 11:53 PM on December 30, 2010

If it were me with a family member living out their last days in a place like a hospice, I would hope that the people caring for my relative possessed the following characteristics:

• compassion & empathy
• a strong work ethic
• a desire to aid and serve
• a desire to comfort and care for
• tact and tolerance for people and customs unfamiliar to them
• the ability to switch from being completely engaged with the people around them, paired with the ability to not get too involved
• access to external and internal resources that will enable them to stay strong as they interact with people who are lonely, in pain, and unhappy

Most of all, though, I would love it if they were someone who was truly there to listen, both to the patient as they sort through the different stages of accepting death, and to the relatives who may or may not visit at all the right times. Based on what you've written so far, I would say that you have some of these traits because you've expressed a desire to be depended on, but I would caution you from viewing the whole experience as something clinical, or even scientific, because that might hinder you from really and truly feeling what it's like to be around people as they move on from this life, regardless of what their or your views are on the post-death experience.
posted by patronuscharms at 11:57 PM on December 30, 2010 [3 favorites]

My experience with hospice is brief (my mother) but I work in animal medicine and observe pet owners/others in end of life scenarios often at work.
Death is a part of life, but in my experience, few people are familiar with dealing with it (most of us don't have to think about it till someone important to us dies, or is dying). Most, living and dying, are at least somewhat disoriented by it, the whole experience. People in both the living and dying positions are somewhat emotionally "off," sometimes unpleasant, fearful, brave, angry, etc.
I can't imagine as a beginning volunteer you'd have much one-on-one with patients/families, these are sensitive sorts of positions (at least we do it that way with your dogs/cats at my practice). As time went by I'm thinking you could work in a number of non-medical capacities, if you still desire.
I do want you to know that I have been present for the deaths of two humans and companion animals too numerous to count, and the "light" goes out of their eyes the same way. It is mundane, as you expect, but also not.
FWIW the folks that handled my mom's hospice experience were very professional and kind, and not very often in eyesight.
I find the (death) work very meaningful but still "owwie," and I wouldn't reccomend it to the curious.
I am thinking this is HARD work for most and perfect for the right individual but ask yourself again why hospice volunteer than any other type of volunteer work.
posted by bebrave! at 12:04 AM on December 31, 2010 [1 favorite]

My roomie's girl friend worked at a hospice. Be warned there's a lot of ick factor in terms of patients' loss of bodily control. Absolute salt of the Earth, she was.
posted by uncanny hengeman at 12:32 AM on December 31, 2010

There really isn't any "dirty work" or medically-related services that hospice volunteers provide. Mostly you would be a friendly visitor a few hours per week. While many people who elect the hospice Medicare benefit stay in a hospice center or nursing facility, a lot of people have hospice services in their own home. If you volunteer with people in their homes you might do some errands or light housekeeping, tidying or meal prep. Again, nothing involving direct patient care. Mostly you are there to keep the patient company and provide some relief to the family members present.

Your local hospice organization likely needs volunteers for administrative tasks. They offer grief support and may need helpers to mail info to the bereaved or organize grief support groups too.

The Hospice Foundation of America website has good info.
posted by coolsara at 1:15 AM on December 31, 2010 [1 favorite]

I once had a volunteer job for a cancer charity, interviewing cancer patients and their families about their experiences. I'm the same age as you. The one thing that struck me, as someone who has never been close to a dying person: they're not saints.

The terminally ill, especially cancer patients, sometimes attract a bit of a halo in the media (especially during "Pink Month" or what have you). However, quite often they are deeply unpleasant, cranky, hostile people to be around, which they have every right to be. They're in pain and they're uncomfortable and they're very, very pissed off that they came out on the wrong side of the statistics, especially if they're young or have children who aren't yet adults. If they miraculously survive then maybe they'll write an uplifting memoir about how cancer made them a better person, but more likely than not they will die an ugly death. The nurses who work in that sort of environment - and I have met a few - are not there to have a personal epiphany about the meaning of life. I believe that if you're the sort of person who is cut out for that kind of work, you wouldn't need to ask strangers for a second opinion.

Given your stated motivations ("I don't feel I have many meaningful connections to others in my life these days. I'd like to be depended on, to be helpful to someone"), I would really recommend getting involved with something like Meals on Wheels or a community centre for older people. They often need volunteers to help with outings, or shopping. My great-grandma has a volunteer who comes and does her shopping and listens to her stories and I know she appreciates the interaction. This way you'll be having meaningful, mutually beneficial connections with people who will appreciate your help. You'll also get to hear some pretty hilarious stories from people who have lived long enough that they don't care what anybody thinks of them :P
posted by jaynewould at 1:30 AM on December 31, 2010 [10 favorites]

Also, seconding coolsara's suggestion of helping out with admin work.
posted by jaynewould at 1:30 AM on December 31, 2010

I spent a college semester working at a hospice (not as a volunteer - I was there every day as an intern to the activities coordinator), so you may not be able to directly extrapolate from my experience... But overwhelmingly, my time in hospice had very little to do with death and a great deal to do with pain. I interacted with patients and their families on a daily basis, both in a hospital setting and in their own homes. Some of the patients were completely 'with it' and I enjoyed my time with them immensely, some floated in and out of reality because of pain and the medications they were on and I had fleeting glimpses of them in states of clarity, and many spent most of their time asleep. I did not actually see any patient die in my 4 months there.

I was quite young, quite naive, and totally unprepared for how difficult I would find the job, especially in the emotion department. I think this had a lot to do with the fact that I spent a significant portion of my time with the families of the patients, and offering support to grieving people is hard.

With that said, I highly doubt that as a part-time volunteer, you would be exposed to much of the dirty, painful side of things; like others have pointed out, you'll probably be doing really basic stuff. But understand that if you're interacting with families, you need to be ready for the difficulties and awkwardness and pain of people who are grieving a loved one.
posted by catch as catch can at 1:33 AM on December 31, 2010

Have the folks who are criticizing this kid's wish to observe the dying ever been patients at a teaching hospital? It's unlikely he'd be more callous than many med students, or the attending physicians who (e.g.) invite all the students in the room to practice palpating the patient's private parts.

If I were dying, as long as you respectfully took care of my needs and didn't try to take my wallet -- and as long as you didn't hover like a vulture --, I'd just be happy someone was there, whatever your motives.

Having been all too close to death -- in a teaching hospital no less -- it's amazing how impending death re-orders you priorities. "Somebody's gawking" ain't near the top of your concerns. "Nobody's there" is.
posted by orthogonality at 3:21 AM on December 31, 2010 [5 favorites]

My wife volunteered for a local hospice organization for several years, quitting only recently. We live too far from the dedicated hospice facility for her to have gone there often; mostly she was assigned to work with slowly dying patients in the care wing of a local retirement community. Her job was basically to spend some quality time with these people. She became friends with them, listened to their stories, helped them write letters. Patients become eligible for Hospice services when their doctor expects them to live less than 6 months. Often the doctor is wrong and the patient lives longer, so my wife's relationships with them sometimes became quite extended. She was able to tolerate and even enjoy relationships with these people, often despite varying levels of dementia, because she'd never known them before they were old and sick. Families might be keenly aware of what was being lost, but my wife could just enjoy her patients as people. Death was just a terminating event, for which she generally wasn't even present. Until then, it's just a relationship with another person -- one which demands some up-front training, more periodic training, and a bit of paperwork after each visit.

FWIW, I do think working in a dedicated hospice facility would be quite different. By the time people are moved into such a center, they are rapidly on their way out. I think the average "stay" at a hospice facility is about a week. Helping out there would probably be very different.
posted by jon1270 at 4:16 AM on December 31, 2010 [2 favorites]

in my recent experience, hospice volunteers did not tend so much for the dying (nurses took care of most of that--volunteers might pop in to say hi or see if my father-in-law needed anything) but they helped a lot with the families. they occupied the kids, they ran errands (a spouse staying overnight needs contact lens solution or tampons), they brought food from the cafeteria to people who could not bring themselves to leave their loved one's side.

if someone has no family or the family can't be there all the time it's different--hospice volunteers did spend a lot of time rocking and playing with a baby whose family lived far away and couldn't afford to stay nearby in a hotel.

if you want more of a social impact, volunteer at a nursing home.
posted by thinkingwoman at 4:33 AM on December 31, 2010

My experience with hospice had more to do with nurses (bless them) than volunteers, but when I interacted with volunteers, I saw that they were accepting in the face of death--not embarrassed by bodily functions, calm during explanations of terrible pain, unfazed by rapid changes of mental status and *willing to be with another human being* during moments most of us would regularly avert our eyes from. I mean be there, really present, without erecting the defenses of "It will be OK" or "Don't be scared." They held my mother-in-law's hand when they talked with her, even when she fell asleep to let he know that there was someone there. They hugged me, a stranger and afraid, simply because I needed it. And yes, they did the practical work of filling coffee pots and cleaning up the kitchen area.

It never struck me that they were curious about death, or self-sacrificing. I think they were there because something in them *had* to be.

If you're curious about the lives of people who are closer to death than you feel that you are, and you want to be helpful and connected, consider volunteering for Meals on Wheels, which typically helps older shut-ins. To feed and be a point of human contact for someone is not nothing, and I am glad that you're considering volunteering.
posted by MonkeyToes at 4:45 AM on December 31, 2010 [3 favorites]

From a third person perspective, I can tell you how hospice work has affected my mother in the last couple years. She took it on, three nights a week as a second income.

My mother is an incredibly personable, friendly, caring person, so she was bound to get attached to all of her patients. So last year she went through a string of loss, which was inevitable, but still difficult for her. Some of her patients lived for months before passing. Spending four hours a night, three nights a week with someone will provide you with the opportunity to get pretty close in a short period. My mother began to read a lot about death (and mostly grief, actually) trying to understand it and not be overwhelmed by it.

After a year of this, my grandmother's brother was on his deathbed. My mother, having learned so much the past year was able to go get my grandmother and help her through a difficult time in a very graceful way. My mother has an understanding of grief and why it occurs and productive ways to cope and prepare for it that is higher than anyone else I know, which is a powerful tool in her belt.

Hope that helps, somehow..
posted by Glendale at 6:11 AM on December 31, 2010 [2 favorites]

I'm Mrs. jon1270, the hospice volunteer he mentions - I became interested in hospice because I watched a long documentary on death and dying produced by Bill Moyers - it was unflinching and excellent; my grandfather had died, and it was comforting to me to see more about the process. Highly recommended, if you can track it down.

I visited with everyone from a wee baby to a man who celebrated his 106th birthday while I was going to see him. Dying might seem dramatic from the outside, but I found the best way to be a hospice volunteer was to slow down and focus my attention on the person - at that stage, they may feel like a lot of things are out of their control, so letting them decide what we were going to do or talk about felt like the right thing. At the same time, they might not have a lot of energy, and they might not want to seem too demanding or feel like they're a burden, so you might need to anticipate that they'd want a Kleenex or a blanket or a wheel through the garden for a change of scenery.

The thing that has stayed with me is this: you are the same person dying that you were living - dying changes little. If you were anxious, you'll probably still be anxious (and you'll probably be upset that you're anxious). I visited with an older woman at the hospice center who was weepy and scared, and kind of embarrassed that she was feeling that way - she just needed someone to be there for her and listen. That's what a lot of hospice seems to be about, so you can be a person (instead of just a sick person) to the very end.
posted by deliriouscool at 6:20 AM on December 31, 2010 [4 favorites]

I am a hospice volunteer. I'm also towards the young end of the scale for such things.

- What do volunteers do? That depends on the hospice's needs as well as the individual volunteer. There are plenty of people needed for "back-end" support... making sure patients' families are comfortable and don't have to worry about mundane thing... sending out information... organizing fund-raisers... those sorts of things. As far as volunteers who interact with patients go...

- What do patient-facing volunteers do? If the hospice has a dedicated facility, there are some volunteers who visit with many different patients (basically, spending time with whoever needs it). There are also many volunteers - like me - who are assigned to a particular patient. My current patient is an elderly woman who has been suffering from a degenerative neurological condition for a number of years... it leaves the body ravaged but the intellect intact.

- What do we actually DO with the patients? Whatever they'd like us to do (note: EXCEPT any sort of medical care... the LPNs and RNs cover that stuff). It's not about how WE think their final days should be... it's about what they want/need. I'd had grand visions of helping my patient write her life story or some such nonsense. Y'know what she wanted? She wanted me to read "People" magazine to her. And so that's what I do, gladly, every Sunday.

- Why SHOULDN'T you volunteer at a hospice? "Morbid fascination" is right up there. Basically... here's the rub. IT IS NOT ABOUT YOU IN ANY WAY. This is the patient's moment. If you are prepared to check your ego and expectations at the door, however...

- Why SHOULD you volunteer at a hospice? Well... I can only speak for myself. I decided to volunteer, basically, because I thought I COULD. There are many, many people who would be glad to volunteer to bottle-feed newborn kittens, or to read to kindergarteners with chicken pox. However, for a number of very valid reasons, a LOT of people don't like to interact with those who are close to dying. It is scary, it is a mind-fuck, it is sometimes gross and disturbing and upsetting.

I thought about all of those things, and largely BECAUSE they weren't tremendously upsetting to me, I decided that I probably SHOULD try to be of service to the dying in whatever small ways I could.

- What's it like, practically speaking? Again, this VERY MUCH depends on the patient(s) with whom you work. My current patient had a reputation for being "difficult". However, over the course of half a year, I feel like I've developed a real friendship with her. Have I changed her life or her prognosis? Oh, hell no. But does she now have something to look forward to that she did NOT have before? A young-ish, tattooed woman who, for some reason, chooses to spend Sunday mornings reading "People" magazine aloud and sometimes watching "The Lawrence Welk Show" with her? Yes, she does. And that makes me very, very happy.

Again: it's NOT about me. I'm doing something that ANYONE ELSE could do. But I still think it's something that results in a net gain of positivity in the world... and that makes me happy.

- What's it like, emotionally speaking? I can't say it enough, apparently - this also depends on the patient(s). Everyone lives differently. Everyone dies differently. I've heard that when parents of young children are dying, it's TREMENDOUSLY hard. My current patient is a bit rough, too... her disease has robbed her of the ability to move, speak, care for herself, etc. ... but she's still entirely present intellectually. It is TREMENDOUSLY hard for her. Do I stay up at night weeping about it? Nope. But has it affected me? Definitely. When you CHOOSE to expose yourself to things that other people shy away from, it will have an impact. In my case, I like to think it's made me more patient and more grateful, among other things. It's also made me a bit more, I don't know... realistic? Horrible things happen to decent people, every single day.

- Will hospice volunteering be a huge, emotionally-profound thing that changes your life and makes you write a best-seller about your amazing transformation? No. And don't do it if that's what you expect.

Visiting my patient is generally THE most-fulfilling part of my week. There are many people who can do the various "jobs" in my life... hell, many of them can do them better than I can! But there is only one person who visits my patient every weekend and reads her the latest celebrity gossip and TV show reviews. It's not a big or complicated or unique job. But I'm still the only one who chooses to do it... and she (and I) are, for that hour, better off than we were before. And that is, in a quiet way, pretty amazing.

- How can you tell if you're suited to this sort of work? Every hospice that I know of makes volunteers attend a fairly lengthy orientation session before they begin volunteering. You will most likely know during this session if it's something you really want to do, or if it probably isn't for you.

For me? I HAD to do it. I wasn't curious, I was compelled... and I'm very glad that I followed the compulsion.
posted by julthumbscrew at 6:37 AM on December 31, 2010 [27 favorites]

I've spent the last few years volunteering about four hours a week to a hospice for people living with HIV/AIDS. I don't think you should listen to people telling you to do admin work, or that your only job will be to make coffee.

I started the position as a requirement for a course I was taking, and continued on afterwards because of how it contributed to my sense of self and the joy I found in my relationships with people there. Early on I vocalized a desire to be directly involved with the residents in all aspects, from playing cards to feeding to helping give baths, and I ended up doing all of these things. I became really close to a few of those people I was visiting over the years, and was with two of them during their last weeks on earth.

Most of the people who ended up at this place didn't have family or friends that were willing or able to care for them. They came from all over, but many had histories of homelessness, drug addictions, abuse and desperation. Many of them had no one visit them as they lay in their death bed.
To be able to genuinely befriend someone, to spend hours each week with them and begin to trust each other and confide in each other, and then be able to provide that person with comfort and friendship and company and a familiar face as they die, as they are afraid and in pain and in a place not home, is such a meaningful experience. It was difficult and affected me, for sure, but I am so thankful to have known these people and be able to be with them as they die. I spent three days with one woman whom I had become really close to...I just sat by her bed and did homework, as she was rarely conscious, but when she was awake I knew how happy she was to have me there.

Feel free to memail me to talk about any of this or other aspects that you're interested in. I too am a nonreligious student in my twenties.
posted by whalebreath at 7:44 AM on December 31, 2010 [2 favorites]

I've been on both sides of this desk (well, my dad has been on the "patient" side) and I think you'd be great if you'd like to try it.

Death is the part of the human experience that all of us are going to have, every one of us, but almost none of us are going to talk about. If you were to say "I'm fascinated by the miracle of birth, and so I want to volunteer in a hospital nursery," you'd get nothing but praise; saying candidly that you're equally interested in the process of dying somehow gets you blame. I don't understand it.

Being a hospice volunteer means acting toward terminally ill strangers in the role of a friend or neighbor. Not a close friend, necessarily--though my dad did develop a strong connection with his volunteers, my own experience with clients has varied--but someone who would drop by with groceries, or to change lightbulbs, or to have a cup of tea and chat. The experience is shaped by the client, primarily, and by the volunteer (and to some extent by the folks who train and coordinate volunteers).

So do that thought experiment while considering if this would work for you; think of an elderly person (though not all hospice clients are elderly, of course) that you know slightly, and imagine yourself coming by their house once or twice a week to chat or help them with their errands or groceries or little household tasks (or, if they were in the hospital, coming by their room with magazines or their mail or whatever). If that feels unbearable to you, hospice volunteering might not be for you; if that feels okay, go for it.

Not everyone's personality is improved by the awareness of their imminent death. My dad's actually was, I think--he was able to reach out to the hospice volunteers in a much more open way than he had been with new acquaintances earlier in his life, and he really enjoyed telling them stories of his life (to their delight, as they assured us). But I have met people who were really angry and frightened, and who expressed that by lashing out at everyone, including the folks who were there to help. I had compassion for that, of course, but it didn't make the experience any more pleasant for me, I can tell you.
posted by Sidhedevil at 9:35 AM on December 31, 2010 [1 favorite]

Read Jon Katz's book Izzy and Lenore, it's his story of being a hospice volunteer with his dog Izzy...among other things...I thinkit describes the experience well.
posted by starfish at 12:58 PM on December 31, 2010

There is much good advice here. I was a hospice executive director for more than 15 years. The only thing I can add is this: If you volunteer for a hospice and are not comfortable there, find another hospice. They are all a little different.

Every Medicare Certified hospice (the vast majority) is required to have at least 5% of their care provided by volunteers. It is not uncommon for a hospice to be closer to 20%. Asking the volunteer coordinator what their percentage is would give you an idea of how much volunteers are used within the organization and therefore how often there may be volunteer opportunities.

Thank you for considering giving of your time and yourself. It is a great experience and both you and your clients/patients will benefit!
posted by Jandasmo at 3:38 PM on December 31, 2010 [1 favorite]

I volunteered at a small hospice for a few months in the 1990's. I went once a week, spent time with patients, helped out cleaning up, and occasionally helped the nursing staff with things like changing patients bed linens, etc. As part of the volunteering, I went through a hospice training.

While it is true that you are there for service, I also found it to be the case that the hospice volunteers had an interest in death. I wouldn't call it a morbid fascination -- more of a sense of holy wonder and awe, a sense of the honor that it is to be present when someone transitions, and the honor of helping someone have a good death.

The volunteers didn't dwell on this or talk about it directly, but there was definitely a sense of honor and good fortune to be present when someone died well.

I don't consider this morbid or odd or unusual. It's no different, really, from midwives or doulas who appreciate --- as part of their work --- being present at birth. Death is so taboo in our modern culture, we are mostly so isolated from it. But it is part of life, and one of the most mysterious parts of life. It deserves wonder and awe and serving presence.
posted by alms at 5:41 PM on December 31, 2010 [1 favorite]

I work for a home based hospice service, and we have approximately 40 volunteers that do home visits to our clients.

The type of tasks they frequently do are: outings (take someone out for a coffee etc) shopping trips (groceries), hand and foot massage, biography writing, respite (sit with the client allowing the family some time out, bereavement phone calls (checking in with family months down the track, and assorted admin work in our office (maintaining our library, writing cards, preparing documents etc)

Most of our volunteers are older, I think we have one person in their 20s. All but one are female. I mention this not to discourage you, but to encourage a little more diversity in volunteer numbers.

Dealing with death and fear and grief on that scale will be a new thing, so ask about training and ongoing support. Any hospice or hospice service should have a strong program to protect their staff and volunteers.

Be prepared for some complex family situations that are exacerbated by stress.
posted by Trivia Newton John at 5:30 PM on January 1, 2011

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