➣ Quality of Life Gathering: A Forum for Healing
by Deborah Grassman
We developed a format of weekly Quality of Life (QOL) meetings with the patient and family where we gather at the bedside. The idea for the QOL meetings evolved from a conversation I had with my colleagues. “Doesn’t it seem odd that no hospital in this country has a suffering team?” My boss thought so too when I mentioned it to her. Next thing I knew, I was designated to start one throughout the hospital.
Quickly I realized that neither patients nor staff would easily accept a “Suffering Team” on their unit; it just wasn’t good public relations. A patient suggested that we call ourselves the Quality of Life Team. “That’s really what you are doing,” he said. “You are helping us improve the quality of our lives.” The name stuck and for the next several years, staff throughout the hospital were trained in providing this quality-of-life service. The “QOL,” as it has come to be known, is one of the primary ways through which we provide spiritual care. We put casters on the legs of our chairs so we could literally “roll” to bedside, sitting at eye level so the power is equalized. The staff who “roll” to bedside include: physician, chaplain, nurse, social worker, and volunteer. We become a unified whole, stepping outside our professional roles unless specifically invited into that role by the patient and/or the situation. Rather, we come prepared to simply share the patient and family’s suffering.
At the start of the QOL gathering, we reintroduce ourselves to the patient and family. The patients have met many people since they were first admitted, and we want to make sure they know the roles we play in providing their care. Then we explain the purpose of the meeting: “We’re here to listen to what might be on your mind or heart. We know this time can be difficult, and we want to listen carefully as you tell us what you are experiencing so we can respond to your needs.” Both patients and their family members usually respond easily to this open invitation to share their suffering.
We sometimes inquire about physical pain and symptoms to make sure we’re providing adequate treatment, but pain and symptom management is not the goal of hospice and palliative care; pain management is simply the vehicle to the goal; the goal is healing. I’ve seen people cured of illness without experiencing any deeper healing. Likewise, I daily witness people who experience healing even though their disease cannot be cured. We explore the emotional and spiritual aspects of their illness during the meeting. Our job is to vicariously experience whatever the patient says, abiding with whatever feelings arise and to connect with the part of the patient that is generating the feeling. We elicit stories so we can gain a sense of the patient’s past, their current struggles, and their hopes for a peaceful death. It’s often a time filled with laughter, tears, and cherished memories. We provide guidance about ways they can reckon with their illness. We explore the spiritual dimension so we can understand how to provide spiritual or religious care that is congruent with their beliefs. We ask if there’s anything we need to do differently to make things better. Not only does the question help us improve care, but the patient sees we’re open and willing to change; they feel free to speak about their needs. We also help them explore the impact of their military history so we are better able to identify its relevance to unfinished business or ways in which it might influence their death. We express our appreciation for their military service by thanking them and ceremonially pinning them with an “Honored Veteran” pin. We also thank their families for the impact the military had on family members and pin them with a military angel.
We offer choices for how to close the QOL session: “We can provide a spiritual reflection or prayer; each of us can offer you a hope for the day; we can tell a joke; we can sing a song; we can each tell you how your story has impacted our own lives; or we can just say good-bye. What would be meaningful to you?”
We’ve found this format to be invaluable for everyone who participates, including the staff. I asked Percy, a patient who had experienced five of these meetings, how he would describe the QOL gatherings. He said: “These meetings are God, man, and staff coming together to help patients feel happier and more comfortable. It helps assure that the patient’s goals are the staff’s goals. In the process, the whole organization becomes better and stronger.”
Pat (co-founder of Opus Peace) has a teenage son, Morgan, who volunteered at the hospital one summer. He attended QOL meetings with patients. He witnessed the transformations patients often experience during their spiritual questing, and he called them “miracles.” Now, when his mother comes home from work, Morgan asks her, “What miracles did you see today?” His mother responds with stories of suffering she saw redeemed. She tells him stories of patients awakening to their interior hero.
I think our QOL meetings are like a story in the book, Kitchen Table Wisdom, by physician Rachel Naomi Remen. Remen attended a workshop for physicians by mythologist Joseph Campbell, in which he displayed a slide of Shiva. “Shiva is the Hindu name for the masculine aspect of God,” Remen writes. She explains that the picture shows Shiva dancing in a ring of flames while his hands hold symbols of the abundance of spiritual life. One of his feet is supported on the back of a little man crouched down in the dust, giving all his attention to a leaf the man is holding between his hands. “Despite the great beauty of the dancing god,” Remen continues, “all of us physicians had focused on the little man and the leaf, and we asked Joseph Campbell about him. Campbell began to laugh. Still laughing, he told us that the little man is a person so caught up in the study of the material world that he doesn’t even know that the living god is dancing on his back.”
In the midst of all the diagnostic and treatment modalities that permeate a hospital culture, we can likewise find ourselves studying leaves and missing the living god dancing on our backs and on our patients’ backs. The time we spend in QOL meetings with patients helps us create room for gods to dance.
Quality of Life Gatherings:
The purpose of Quality of Life (QOL) gatherings is to support successful suffering as people encounter difficulties in their lives. Abiding and reckoning are the primary therapeutic processes used. QOL gatherings are especially meaningful when provided during critical transitions in peoples’ lives, such as changing jobs, teenage crises, or facing terminal illness. The following information provides a basic foundation to facilitate the QOL process in an inpatient hospice unit. However, the knowledge can be applied in any setting, situation, or relationship. The most important thing we bring to QOL is openness and willingness to do it.
QOLs are normally done with the team sitting at the patient’s bedside; however, they can be done outdoors or in area that is meaningful to the patient. QOLs should include all the people who are affected by the situation. If people can not be physically present, conference calls that include everyone can be made. The call is then placed on speaker phone so that everyone can participate.
QOLs are often verbally interactive, but they might not be so. With people who are cognitively impaired or comatose, quiet nonverbal presence may be more effective. Touching and singing also bring comfort.
You want to open doors without pushing people through. Pushing can do damage. Not opening the door also does damage. It abandons people and isolates them from talking about important issues no one wants to talk about, issues they may not even know how to talk about. We are often guilty of not opening doors because we fear pushing. It means we are putting our own comfort needs above the patient’s needs. It means we are more worried about making a mistake than learning how to respond to difficult needs of others. You have to have courage to make mistakes. When you do, apologize: “I’m sorry. I can see I overstepped. I apologize for not listening more closely.”
The opening of the QOL needs to acquaint the participants with the purpose of the gathering. It should also establish time boundaries as well as introductions of everyone present. Examples might include:
• “This is a 30-minute session when we come together to hear what might be on your mind and heart, a time for us to listen. We don’t have an agenda. This is your time. We’ll start by introducing ourselves.”
• “Sometimes we get so busy doing things to patients and for patients that we forget how important it is to just quiet ourselves and be with patients, to listen. So, we take these 30 minutes to just be here with you, to see how you are doing. We’ll start by introducing ourselves.”
• “We call these meetings our Quality of Life meetings. We don’t know what quality of life is for you. Our job is to take these 30 minutes together to listen so we will know how to respond to your needs, to find out what’s important to you so that your quality of life will be improved. We’ll start by introducing ourselves so you know who we are and what we do.”
Although we need to make inquiries into physical pain, the QOL should not stay focused on this dimension. If inquiries make you realize that more time needs to be spent assessing and alleviating physical pain, then the clinician can further assess this factor after the meeting is over.
• “How is the physical pain today?”
• “How are we doing getting the pain under control?”
Exploring the emotional dimension of suffering is one of the most important aspects of the QOL. Because several clinicians are present, different perspectives are provided. Because multiple family members and friends are present, alternative pieces of the suffering puzzle often avail themselves. I usually start out with a general question about change. Commenting on all the changes that they have experienced in recent days validates their suffering and also gives me an idea of how they are responding to it.
• “Your life has changed a lot lately.”
• “I would guess that you are reeling with all the changes you’ve had to go through.”
• “It’s not easy to have to go through all the changes that have happened in the past few months.”
• “You’ve been struggling with a lot lately.”
• “You’ve had a hard go of it.”
• “It takes a lot to go through what you’ve been through.”
• “You’ve endured a lot.”
• “I would guess you’re pretty weary with all that has happened.”
• “Tell us about the difficulties you’ve been having.”
• “Of all these difficulties, what is the hardest for you to deal with?”
Affirm and Validate Feelings
Engage the emotional component of the person’s experience. Help them to honestly feel whatever it is they are feeling. Take them into their emotions instead of away from them:
“I know it can be hard for you to express feelings, but now is not a time to pretend like nothing is going on, that nothing has changed.”
• “It may be difficult to express the hurt you may be feeling. It may be tempting to try to hide it and act like everything is going on like normal. It takes a lot of energy to pretend.”
• “How’s your heart today, your inward heart?”
• “I can see you are comfortable talking about the pain. I’m wondering if there are ever times when you let yourself feel your pain?”
• Empowering silent voices: “If your _________ (anger, fear, cancer, liver, Deeper Self) could speak, what might it say?”
Many people would rather feel angry than experience vulnerable feelings. Anger keeps other feelings away. Anger often covers up hurt, fear, and helplessness, especially in men. On the other hand, many people have been taught that it’s “unlady-like” or ungodly to feel angry, in which case they need encouragement to acknowledge their anger. The approach to anger depends on which end of the spectrum the person is on.
Creating space with someone who tends to hide their anger:
• “I think I might feel angry if something like this happened to me.”
• “I’m wondering where your anger is?”
• “I’m wondering why you’re not feeling angry?”
• “Sounds like you might feel a bit angry about all that has happened.”
• “What else makes you angry?” (This question takes them into a deeper level.)
Creating space with someone who uses anger to hide other feelings:
• “I’m wondering if beyond the anger, might be a bit of hurt. It can be very hurtful when ____ happens.”
• “I’d be hurt and sad if something like that happened to me.”
Creating space with patients who anger us. Approach patient when you feel calm and centered. (Remember the Samurai warrior never acts out of vengeance, only for cause.) Come bearing kindness:
• “I find myself angry with you sometimes because you treat me disrespectfully. I want our relationship to change, but I don’t know what I can do differently. It seems like nothing I do satisfies you.”
• “You look worried about something.” (Cite your observation.)
• “I would guess that this is a bit frightening for you.”
• “What else might be a little bit scary for you?” (takes people to a deeper level)
• “You look down today…” (observation)
• “You seem sort of heavy…” (observation)
• “I’m wondering if behind your hurt and tears, might be a bit of anger. Many people might feel angry when something like this happens.” (For people who hide their anger; women are often encultured to do so.)
• “Of course you are crying. This is a sad time.”
• “It’s good to see your tears.”
• “Your mouth is smiling, but your eyes are not.”
• “They say that the only bad tears are uncried tears.”
• “What else about this situation might hurt a little bit?”
• “It’s been a lonely road you’ve had to journey.”
• “It takes a lot of courage to let yourself feel lonely.”
Most people want certainty and a guarantee that everything will remain the same. Helping people accept uncertainty as part of life’s transitions can decrease their fear. At the heart of all fear of change is an unwillingness to let go of same and open up to different, that is, wanting things to go back to the way they used to be. Helping people let go of same and open up to different brings peace. Validate change and help them anticipate its occurrence:
• “Your world has changed a lot.”
• “Your world has really shrunk.”
• “Now is a time of uncertainty. Learning to be at peace with the uncertainty is hard.”
• “What else is difficult about the limbo that you’re in?”
• “I know that __________ (staying on top of things, being in charge, being able to take care of your wife, etc.) has been important. Things are changing now though. More changes might be coming. I’m wondering what things are important for you to let go of so things could go more smoothly?
• “Would you consider letting _______ (same) go?” (cooking dinner every night, working 40 hours/week, putting up the Christmas lights, etc.)
• “What would happen if you let that go?”
• “How would things be different for you if you were able to let that go?”
• “You have given all your life: to your family, to your job, to your country. Now is the season of life when it’s your job to accept help from others. You’re in the cycle of life where it is important for you to learn how to receive.” Then, pin a “Gracious Receiver” button on them. The “Gracious Receiver” button is especially important for people who are stoic.
Don’t quickly dismiss guilt or minimize it. Give it time and attention. Be alert to “false forgiveness” which can be a way to avoid doing the work of forgiveness.
• “Sounds like you may feel a bit guilty about that.”
• “Sounds like you let her down when you did that.”
• “I’m wondering if you’ve considered asking for forgiveness about that?”
• “I wonder if you have forgiven yourself for having done that?”
• “Would you be interested in learning how to forgive and let that go?” (only after some exploration of the guilt).
Many roles are designed to protect, fix, do. Helplessness threatens all these. The goal is to become at peace with the helplessness.
• “Is there room for dependence on others in your new situation that you are now facing?”
• “Sometimes helplessness can make people feel angry. Is that the case for you?”
• “How difficult is it for you to let go, to relinquish control?”
• “I know you’re a doer and a giver. How are you about receiving?”
• “Are you the kind of person who can accept that things are changing and ask for help?”
• “If you don’t ask for help and you need help, what do you do?”
• “It can be very humbling to have to depend on others now.”
• “How might pride be getting in your way right now?”
• “What else are you feeling helpless about?” (Takes people beyond surface answers)
Point out Incongruities
Remember that only 10% of communication is verbal. Nonverbal communication is often more accurate. Stay tuned to it.
• “You’re smiling on the outside, but your eyes seem sad.”
• “I know you said you feel ‘fine,’ but you don’t sound like you really mean it. I noticed you sighed as you said it.” Beware of “fine” in unfine situations. (Fine acronym means Freaked out, Insecure, Neurotic, Empty)
Make sure you don’t just paint half the picture when explaining options to patients. Explain hospice care too so they can truly make an informed decision.
• “You know what medical care is like because that’s what we’ve been providing. The difficulty is that your needs are changing and medical care can’t help as much now. We have other things that can better help. Your quality of life is important. You might choose a more flexible environment of care like hospice. They will get you outside to smoke, get you a beer, let your family stay with you, go home on pass or out to restaurants, let your pets visit, put you on a motorized scooter so you can enjoy the outdoors, those kinds of things. They are experts at pain management and helping you achieve peace.” (Follow with a long pause.)
• “Pretend like you died today. What would be left unsaid or undone?”
• “What are your hopes so that you can achieve a peaceful death?”
Include Family Members
• “Do you all have the kind of relationship where you can speak openly to each other about what’s going on or do you all sort of try to protect each other so that the outside always seems fine and on the inside things are not so fine?”
• “You two have shared so much. I’d hate to think you are leaving each other alone and that you’ll miss this special time together. I can’t think of anything worse than spending the last few weeks lying to each other.”
• “It has to be difficult to even think about letting him go.”
• “Your world is going to be very different after he dies.”
Opening Spaces to Reckon with Grim Futures
• “I’m sorry. I wish I could do that” (when they’re asking for futile treatments).
• Sometimes people think we are God, that we can fix anything, do things beyond our abilities.”
• “If there were any further medical treatments we could offer that would help, we would do it.”
• “In spite of everything we’re doing, your condition is getting worse.”
• “I’m worried about whether you’re going to be prepared for the end of your life. Tell me a little bit about what thoughts you have about getting ready for your death, whenever it comes.”
• “We can’t control the quantity of your life. We can control the quality.”
• “This is a very precious time of life because you might not have many days left. You might want to think how you want to spend these days, so that no day is wasted doing something you don’t want or distracts you away from what might be important.”
• “All of us need to be prepared for death so that when it happens nothing is left unsaid or undone. Whether you die today or 10 years from now, it’s good to be prepared.”
• “Some people worry that if they talk about death then that means it’s going to make it happen or it means they are thinking ‘negatively.’ If something is so fearful that we can’t even think or talk about it, then it has a lot of power over us; it occupies a lot of space and energy.”
Ultimately, the goal of QOL is to help people achieve peacefulness in spite of the turmoil and chaos of change that is occurring.
• “If you died today, what would be left undone or unsaid?”
• “Pretend like your loved one died today. Would you have any regrets? A year from now, would you look back at this time and wish you’d said or done something differently?”
• “Hopes change. Your hope has been in the physical dimension, hoping your body would get cured. Tell me about your hopes if that doesn’t happen – your hopes about the non-physical dimension.”
• Relationships: “What would you hope could happen between you?”
Seven Tasks of Living and Dying Healed
Ira Byock provides the first five steps of living and dying healed: forgive me, I forgive you, I love you, thank you, good-bye.1 I have added two more steps: let go and open up. I believe that the reason you do the first five steps is so you can achieve the last two. At the heart of successfully navigating any change is the ability to let go of same and open up to different. For palliative care patients, I make sure that the first four steps are addressed; for hospice patients, I cover all seven steps.
• “Sometimes people think there’s nothing that can be done. It’s true that nothing more can be done for you physically, but there’s a lot that can be done for healing, for emotional wholeness. There are seven things that will help accomplish healing. All of us have done things to hurt one another. None of us are saints. Now is a time to reflect on people you may have hurt and consider asking for forgiveness. Think about those who have hurt you, and any hurts you may be holding onto. Consider letting them go, offering forgiveness. Think about whom in your circle of friends and family may benefit from an expression of your love. Think about those people who have impacted your life who might benefit from an expression of gratitude for having touched your life. The next thing is the hardest, but probably the most important, and that is to say goodbye. Say goodbye to all those that you love and want to hold onto. Say goodbye to this world and everything in it and open up to the next world, however you conceive that world to be or not be. Say goodbye to all that’s been the same and get ready to say hello to all that is different. After you’ve done these five things, then your new job is to relax and let go. Open up to all that is new and different that is coming your way. If you are willing to do these things, you will be more peaceful. It’s a good way of living healed too. In fact, I practice this at the end of every day.”
Emotional Pain Scale
• “On a scale from 0-10 where 0 is perfect serenity and 10 is complete turmoil, where are you right now?” Patient describes what the number is. Get them to describe what this means to them. Then, “What needs to happen for that number to be a __ ? (Decrease the number that they give you by 1) What would be different?” (They are revealing to you what they need so they can heal.)
Vision for the Future
• “What hopes do you have for your death?”
• “What would a ‘good death’ look/be like for you?” (…and if that’s not possible? What else?”)
• “What do you need to do to get prepared for your death, whenever it comes?”
• “What do you think death is like?”
• “What do you think life after death is like?”
Power of AND
Try to gain both sides of a story. Invite completeness. Avoid either/or dualism.
• “He sounds like a saint. Can you tell me a little bit about his ‘not-so-saintly’ ways? (This approach counters the “canonized by death” syndrome.)
• “He sounds like a demon. Can you tell me about one redeeming quality that he may have had?”
• “Sounds like things are going great for you. I’m wondering about the times when things weren’t going so great.”
Make sure to distinguish between religion and spirituality:
• “Tell me a little bit about your faith life.”
• “How are you doing spiritually?”
• “Do you feel ready to meet your Maker?”
• “They say ‘there’s no atheists in a foxhole.’ Is hospice a foxhole experience for you?”
• “This can be a very important and productive time for exploring the spiritual dimension, a time to ask questions and seek answers. It’s a time of questing. Would something like that be meaningful to you?”
• “Sometimes religion hasn’t been important to people during their adult lives, but as they’re nearing the ends of their lives, it becomes more important.”
• “Would prayer or a nonreligious inspirational reading be meaningful to you?”
• Offer a hope: “May you have a deep sense of peace and understanding (based on whatever they need) this day.”
Find out what a situation or relationship means by asking questions that tell you the meaning it holds for them:
• “What difference did that make for you?”
• “How has that come to be important to you?”
• “What that tells me about you is that you have been _______ (conscientious, irresponsible, a good role model, a disappointment, etc.)
Distinguish between reminiscence and life review. Reminiscence therapy simply recalls stories; we recall stories automatically when we meet with old acquaintances. Life review therapy, however, goes beyond sharing memories. It adds the component of evaluating what the experience meant. So invite stories and then figure out how they mattered or how they made a difference.
• “Tell me how the two of you met.” After the story, sum up the meaning: “Sounds like he knew what he wanted right away, but you needed a little more time to know what you wanted.”
• “Tell me your favorite story about growing up together.” After the story, offer a meaning: “Sounds like you really looked up to your big brother, that he was your hero.”
• “What’s a funny memory that you will always have about _____?” After the story, sum up what it means to them: “Sounds like you had a good sense of humor, that you were able to laugh at yourself.”
• Comment on pictures in the environment. “It looks like everyone except that little boy on the side is having fun in that picture. He looks a little worried about something.”
• “What does your _____ especially love or appreciate about you?”
• “How has _______ been important to you?”
Affirming Qualities that Promote Healing: Honesty, Humility, Courage
Try to counteract pride, independence, and control by helping people value qualities they have which will transform their experience:
• “It takes a lot of courage to open yourself to your emotions and fears. I admire that.”
• “I appreciate your honesty with yourself and with me. It’s refreshing.”
• “You’re accepting life on its own terms now rather than trying to impose your own. It’s a humbling process. Humility is a good thing, an honorable quality I see in you.”
• “Tell me a little bit about how things went for you in the military.”
• “You probably saw a lot of ugly things in that war. Is there anything that might still be troubling you a little bit now?”
• “Some combat veterans have told me they lost their soul in that war. Did anything like that sort of happen with you?”
• Thank them for serving our country. Honor them with a flag pin.
• If family members have sacrificed because of their loved one’s service, honor them with an American flag angel pin.
• If a person is a Vietnam War veteran, have another Vietnam War veteran pin the Vietnam War beads on them (Go to “tools” section for more information).
Most Pressing Need
• “You’re struggling with a lot of difficulties, a lot of changes. What’s the most difficult?”
• “How can I help today?”
• “What can we do today to improve your quality of life?”
• “Is there anything we can do a little bit differently to make things better?” (Implies that you are open to change and willing to let him tell you his needs.)
Needing to Interrupt
• “I wish I could hear all of that story, but right now I’m wondering about _______.”
• “I hate to have to interrupt you, but I need to know about ______ right now”.
• Provide a warning of approaching time limit: “We only have a few minutes left. Is there anything else we need to know that you can briefly tell us?”
• “Is there anything we didn’t address that you wish that we did?”
• Offer choices for closing:
– Prayer: “What would you like us to pray for today?”
– Hope for the Day: “We can each offer you a different hope for the day. Your job is to just remain silent and absorb our intentions.”
– Tell you how you have impacted us today.
– “Just say good bye.”
General Guidelines for Implementing
the QOL Format
• Remember, the patient has never died before. They may not know how to do it or what their needs are. Our job is to open the door without pushing: to push damages, to not open the door damages. “Patient-centered care” does not mean that we do whatever the patient says and we’re not on the playing field. Also, we have to be careful that we don’t get prescriptive, thinking we know what this patient needs without their direction and lead. It’s a tension that we negotiate and navigate to get the best outcome.
• Want to hear him, join him. Sit down. Lean in. Have their affect reflect on your face. They should be able to see their words in your face.
• Share the questions. Don’t provide the answer. Make provocative statements and then let the statement hang in the air: “I would think this is pretty scary…”
• Be curious and with wonderment about their experience: “I’m wondering if you’re worried a little bit about what’s going to happen to you?”
• Couple ambiguous words (maybe, might, little bit, sometimes, guess, wonder, usually, possibly, etc.) with direct words that might be threatening (death, guilt/shame, etc.): “It sounds like you might be feeling a little ashamed about what you did…”
• Remember people usually get lots of affirmation for being positive and feeling happy. There’s not always a lot of people to validate their suffering. Validate it!
• Acknowledge any uncomfortableness, awkwardness, hesitancy, distraction that you might be feeling: “I’m a little hesitant to bring this up because I might be pushing into private business, so I don’t want you to feel like you have to answer this, but have there been times when you mistreated your children?”
• For patients that you’ve done several QOLs with, ask them for a question they want us to answer: For example, they might ask us, “What do each of you think about __________?” (life after death, how you would respond if you have to wait for death once you’ve accepted it and death doesn’t come, etc.)
– When to use silence:
a. Whenever the patient expresses feelings: Stop! Just experience the feeling
b. After asking a probing question: Real answers take time. Also, a little anxiety in the air helps take the patient deeper into himself. Instead of a superficial answer, a deeper answer often emerges.
c. With older or impaired patients where it takes time to think and respond.
– When not to use silence:
Don’t use silence if it places an expectation on the patient to perform. Try to avoid putting the patient in that kind of situation, but if you do, rescue him from it. For example, you say to a patient, “Do you remember my name?” He might not and it can feel embarrassing or he might feel like he didn’t pass your test of name recall. Instead, say: “I know you meet so many people here and there’s no way you can remember all our names. My name’s Deborah and I met you last week when you were in the hospital.”
• With threatening topics, keep a solemn but light-hearted tone.
• Always reinforce expression of feelings by affirming the honesty, courage, and humility it takes to do so.