Electronic supplementary material
How can hospice palliative care – which recognizes the importance of spiritual care at the end of life and beyond, yet which is chiefly framed and informed by secular ideas, contexts, and practices – better meet the religious, spiritual, and existential questions and needs often present at end of life?
Chaplain/Spiritual care provider
Health care provider
Catholic Hospice, Miami
Zen Hospice Project, San Francisco
Salvation Army Agapé Hospice, Calgary
Jewish Hospice Program, Toronto
Results and discussion
Foundational principles that influence the organization of spiritual care
1. Quality spiritual care incorporates the spiritual into every other aspect of hospice palliative care such that the spiritual is not merely a part or element of care, but rather a descriptor of the kind, nature and quality of all care.
2. More profoundly than in any other area of care, quality spiritual care is guided and directed by the dying person and the family.
3. Hospice palliative care is fundamentally a vocation, and the work is inherently spiritual.
Principles that enable a high‐quality approach to spiritual care by care providers
4. Quality spiritual care requires care providers to allow spiritual questions and issues to emerge.
5. Quality spiritual care entails the act of ‘witnessing.’
6. Quality spiritual care considers place as sacred.
Principles that enable the spiritual care practices of care providers
7. Quality spiritual care includes rituals and times dedicated to marking transitions and processing experiences.
8. Quality spiritual care involves creating and sustaining relationships beyond those typical between co‐workers.
9. Quality spiritual care emphasizes the role of volunteers, whose presence and work reinforces and ensures that hospice palliative care is grounded as vocational and spiritual.
Quality spiritual care incorporates the spiritual into every other aspect of hospice palliative care such that the spiritual is not merely a part or element of care, but rather a descriptor of the kind, nature, and quality of all care.
whatever is needed … needs to be provided. We can call in assistance but between the time a challenge comes up – if someone asks you to pray at their bedside, you don’t say, “no, wait, let’s get the chaplain to do that.” We don’t do that. Everyone has the power to be able to sit down and have that prayer, or to read the Bible if they choose, or to read the Qur’an if they would like us to. Whatever that is, we’re there to be able to do that.
Sure you have to do the medical, but it’s more than that. You have to give of your spirit.... I am not just going to give medications, it’s more than that. I have to put something behind that, in the way I administer it, and how I approach the bedside with it, and involve the family, and not be rushed, just be very slow… if I do that then I would say it is part of a spiritual practice.
Hospice palliative care is most effectively delivered by an interprofessional team of health care providers who are both knowledgeable and skilled in all aspects of care within their discipline of practice. (emphasis added)
… have an advantage over the chaplain, the priest, the rabbi, the imam, because they are considered religious persons. They have their place but they tend to wait until the end when there’s nothing else to do. Nurses …. and myself are there the first time and we are welcomed with open arms.
Every human being… if they can tap into it, has this human ability to be chaplain-like. People have been dying for as long as there have been people, and so there have been people sitting next to them for as long, you know, and I think we all have that ability. People think they don’t. People say, “You do such great work,” and I’m like, “It’s nothing different from what everyone else could do.” There’s no magic.
You know what? I was very close to my mother’s nurse and she brought me more comfort than the priest that came, who I didn’t really know all that well. I knew the nurse and the aide that bathed my mother every day.
religious issues … are, like most issues of belief, very personal and as these questions are usually addressed to us directly as an individual regardless of profession they must be answered as such…. The shorter, less formulated, response of the nurse for example is more comforting and true for people than that of the “professional”.
Although spiritual care is traditionally seen as the chaplain’s area of expertise these competencies assume that all staff and volunteers can and do provide spiritual care. (:2)
More profoundly than in any other area of care, quality spiritual care is guided and directed by the dying person and the family
we have a radical acceptance or radical openness to meeting the resident right where they are… it’s really about letting the resident lead the experience. It doesn’t matter what happened last week. It doesn’t matter what we want. If we’re holding any agenda, like, drop it at the door. It’s really about letting the resident lead the experience and being open to whatever they need from us.
If … you go in with God in your heart and in your hands, and you forget everything else, anything else, and you just concentrate on the patient and family, like ‘how can I do to help you?’, ‘what else can I do to help you?’
I can come in as a rabbi if they need a religious authority, I can be a teacher if they need to know what Jewish traditions say. I can be a friend if, because of the terminal illness, the friends have been scared away. I will let the person drive the bus.
If you’re talking to somebody you can develop some rapport. Sometimes it happens really quickly; sometimes it happens over the course of many weeks. And you see them, you see who they are, and you can sort out with them what might be helpful for them.
Palliative care is fundamentally a vocation, and the work is inherently spiritual.
Workplace conditions and rewards
There is always room for improvement and the training showed me that there were things I could incorporate that would be helpful to me and benefit the patient.
… I made sure I was there on [every] Friday morning before I did my volunteer stuff, to go in and take part in this twenty minute session and – non-denominational – and it was very good, very uplifting….
Vocation and altruism
This […] is a very giving job, time, etc., but every [dying] person has given me something of their life experience, they have taught me something and it has been an amazing journey. You are very sad when they pass away.
In our lives, it’s very important to keep God first, God first in our lives. So I have also tried to drive that point home with my dad, and so going back to hospice, they have been very helpful with that angle.
Quality spiritual care considers place as sacred.
… a sense of peace and a sense of community… and even if the resident isn’t interacting, is imminently dying, there’s still that togetherness around that person, and the garden creates that, the garden provides that intimacy, and people connect with nature.
I’ve brought religious objects, medals – you’ll see statues and things around the house so you know the person finds them significant – so I’ll bring a religious object, a cross, or a picture with a prayer on the back. They seem to value that a lot.
The best word for this characteristic of the arts seemed to be special…. While “special” might seem too imprecise and naively simple, or suggest mere decoration, it … denotes a positive factor of care and concern that is absent from the other words. It thus suggests that the special object or activity appeals to emotional as well as perceptual and cognitive factors—that is, to all aspects of our mental functioning.
Quality spiritual care requires care providers to allow spiritual questions and issues to emerge in the course of developing relationships with the dying and their family members.
I believe that once you get to know someone, there are many ways you can get an inkling in terms of how they are feeling and how they are doing, how things are going, from reading the larger situation.
I try to see each resident who comes in within the first day or two of their arrival here, and people will often say, “Oh, I’m not spiritual.” “Well, that’s all right. I’m here to see how you are. Tell me how you’re doing; I just want to know how you are.” From there a relationship forms or doesn’t form, depending on what their will is.
Your presence as a human being with a spiritual inclination is very helpful to the person without verbalizing it too much. And I think you can convey your concern for their pain without even thinking about it too much. In fact, the less you think about it, probably the better.
don’t want answers. They don’t want us to figure things out for them. They just want to talk…and boy do they want to talk. I think good listening here is what is required.
Quality spiritual care entails the act of ‘witnessing.’
our radical openness to meeting the person where they are [involves] present[ing] a clear witness which is supportive and liberating for the resident.
I believe all people have that insecurity, you know, “have I fulfilled my potential?”, you know, “what has God wanted for me in this world?”, you know, “will we be able to measure up to the expectations of our potential?”
…flesh out things that are meaningful and significant, in a way that can help…. It’s about taking each person, walking with them, facilitating with them … a greater understanding of what’s going on.
I went there, and I held the patient in my arms. It was a three year old girl with cancer. Then 30 minute later, the nurse [said], “Deacon, 315 just expired.” It was a Haitian lady, 103 years old. Three years, 103 years. What can you reflect about that? Talking to the family of a three-year-old, talking to the family of a 103-year-old? God provides: I don’t know what did I say, but they got the message.
I think, what if there is no heaven? What if there is no afterlife? And this is just me in the room, you know, honouring this person’s life lived, and what remains of them is this physical shell, which is very still and very cold, and it’s still worth honouring, even if that’s totally it. It’s a really sacred time, and to bear witness to it is worth doing. Even for me, even if I’m the only person witnessing this, I’m witnessing it.
High quality end of life spiritual care includes rituals to ensure space, time, and opportunities to mark transitions and process experiences.
In a shift change meeting, we will start off with a 10–15 minute sitting period, so everyone, the volunteers leaving their shift, the volunteers coming in for theirs, are sitting together. And then we begin basically a process circle where each individual volunteer has an opportunity to check in on their experience.
And I suppose my preparation, some of it – I don’t always succeed at this – but what I try to do – and this is not my idea, it’s something I read somewhere: before I go from one room to the next room, as I’m cleaning my hands, usually, I try to leave whatever was in that back room and go into this new room … having taken three deep breaths and just walking in and hopefully not dragging either the issues from the other room or maybe my personal issues that day, into that room. Just try to go in like a breath of fresh air…
If we’ve had a resident who has been here for a long time, the room that that person has been in when they pass, we gather the staff together, and we have a period of time, a little ceremony that we do, where we do ‘beginnings and endings’, and it involves some scripture, it involves the lighting of a candle, it involves giving the staff time to share their thoughts and memories about this person, and it ends with a prayer for the individual and for a cleansing of the room so that it’s prepared for the next.
… one [ritual] is the bathing of the body in these ancient oils. So you bring the water up with all these washcloths and then the family, friends, whoever wants to participate, volunteers, staff, we all gather round the bedside and usually there’s one spokesperson – it could be a volunteer, or could be [the director of volunteers], who will be the person who kind of guides people and encourages stories … as you … dip the washcloths in these ancient herbs, and tenderly wash the hands, or the face, or the feet.
Quality spiritual care involves creating and sustaining relationships beyond those typical between co-workers.
Wednesday is probably my best day of the week. I like coming here, and it’s not just what I do, it’s because of the people around me when I’m here doing what I’m doing.
And in speaking to other people, so when you come here for the training, you’re not only being trained about whatever it is, you are speaking to colleagues going through the same thing…. It validates what you’re going through because your spouse doesn’t get it, your friends don’t get it, your family don’t get it. It’s a very unique position we’re in.
Having everyone say when you are walking into the building, “Hi, Rabbi, how are you? Hi, Rabbi, how are you?”, you know, with a smile, and it’s not forced: it makes me feel good, the fact that I have the same feeling for them, and it’s not forced. I love everybody in this building. They’re great people to work for, they’re great people to work with.
Quality spiritual care emphasizes the role of volunteers; the presence and work of volunteers reinforces and ensures that hospice palliative care is grounded as both vocational and spiritual.
…the volunteer presence […] is really wonderful for the residents…I cannot say enough about our volunteers…. They have time to deliver the care that is needed (outside medical care) and residents open up to them in ways that they will not with staff.Really, honing in on what the volunteers do. Volunteers are amazing people, who give their entire heart to this organization; it’s quite inspiring to watch their contribution to the community and … the little things that they provide.Volunteers provide a passion that you don’t [always] see in employees, they are here even if they don’t get paid…. And they have heart, ….
being versus … doing. You know, if there’s a nurse in the room, they’re doing something because they are so short-staffed; they have a long list of things to do. And if they don’t have anything to do in the room, they’re probably not going to be there. So a volunteer can be the person who can just – I have heard it said, “you Zen Hospice volunteers are so good at doing nothing,” which is kind of why we’re there. It gives this extra cushion, buffer, to the suffering situation, because there’s somebody there who … could be there at their bedside for as long as they need you.
that the presence of the volunteers is a reminder to the nurses that, “Oh, I can tap into my spiritual nature in addition to just focusing on the clinical circumstances of the resident whom I am serving or treating”…. And so if you take the volunteers completely out of the picture, I could see how, given the intensive nature of this work, for a lot of nurses, they might start to lose touch with that more spiritual approach.