Presentation Excerpts from Alive Hospice’s
Conference for Faith Leaders: Death, Dying and Congregational Care
August 6, 2010
Presentation #1: Understanding the Terminal Patient
By Chaplain Allen Withers
Good morning to you! You’re awake. That’s great! That’s a good thing. With a crowd like this, I was tempted to get an offering plate.
It’s so good to see you. We’re so glad you are here. I hope you will have not only an enjoyable time with us, but you will get some insights into Alive Hospice, what hospice is and what we do, and also some knowledge about dealing with terminal patients, which we deal with every day, so thanks so much for being here.
Just wanted to give you a little bit of background. Usually when I say that I’m from Alive Hospice, someone will say to me, “Oh, you mean hospital.” Hospice is actually a term that comes from medieval times when persons who had committed their lives to sacred journeys, and a hospice was literally a place where weary pilgrims could stop, rest and refresh before continuing their spiritual journey. The term accurately symbolizes what modern-day hospice is: a way station where terminally ill patients can be cared for in the final stage of their life’s journey.
Originally it was developed by Dr. Cicely Saunders at St. Christopher’s Hospital in London in 1967. The modern hospice movement is fairly new. She began her career, interestingly, as a nurse and then felt like she could not impact the medical community with what she thought she needed for terminal patients. She went back to school and became a social worker and intended again to impact patient care. That didn’t work as much as she thought, so she went back to school again and she became a doctor because she figured the doctor had the power lever, if you will, on that. She became a doctor and did a wonderful job there at St. Christopher’s.
The modern hospice movement began in this country in the ’70s. Let me tell you a little about Alive. Hospice was chartered, our hospice, in 1975. Alive Hospice provides a variety of services to our folks with life-threatening illnesses, up to and including grief and bereavement. One of the most recent additions we made was our 30-bed facility. In addition to that we also have two IPUs, inpatient units, at Saint Thomas and also at the Skyline Madison Campus. That’s where the old Tennessee Christian Medical Center was. Both of those are 16-bed facilities. Usually one the questions I get: “Well, that’s the hospital staff, right?” No, that is our staff that are in those facilities.
We’re community-supported and nonprofit-oriented. Our services are based on need rather than ability to pay. A little lady asked me a couple of weeks back, “Who owns Alive Hospice?”
I said, “Sweetheart, you do.”
She said, “I do?”
I said, “Yes, ma’am. There are no corporate headquarters located in Atlanta, Dallas, or somewhere. We’re locally based and locally supported. Our board is a rotating board that we all answer to, of folks right here in the community. We’re a United Way agency. We’re a nonprofit agency.”
As Jan (Alive Hospice President and CEO Jan Jones) likes to call us, we are a community treasure.
She smiled. She had never thought about that we weren’t owned by some large conglomerate or something, but is true.
Our mission statement: We provide loving care to people with life-threatening illnesses, support to their families, and service to the community in a spirit of enriching lives. Often, we get the question: “You’re a hospice and you’re dealing with death and dying. Then why in the world do you call yourselves Alive Hospice?” We’re called Alive Hospice because of our strong commitment to helping patients live to the fullest their final days of their lives.
Some interesting facts for you: Although a referral to Alive can come from any source, the eligibility of the referral is coordinated with the patient’s primary physician, and they function under his or her medical orders.
We function in an interdisciplinary kind of team setting. That’s important.
What are the problems that terminal patients face? There are three areas that terminal patients face in their lives, primary areas: pain, isolation, and a loss of control.
Pain. Patients who are dying should not have to wait until pain develops before a medication is administered. It is offered at regular intervals to preclude pain from starting. Pain control and the medications that we use are monitored very carefully because we do not want the patients to have what we term “break-through pain.” We don’t want them in pain.
Another issue is isolation. The dying and their families often find that people are reluctant to be with them, and so many they’re left isolated when they need support even more than ever. I tell folks sometimes if you look at a target with the bull’s-eye and rings around the target, the sicker the patient gets, often friends and family step further out on the rings as the patients get sicker. They don’t want to face it. And by the way, sometimes being with terminal patient holds up a mirror to us, right? Because we’re all terminal. And some people don’t want to deal with it and just don’t want to talk about that. They drop off their visits or being close to the patient or whatever, and so they feel even more isolated. And sadly, yes, even spiritual support sometimes drops off a little bit. Many pastors and lay leaders and church friends have no ears to hear the fear, doubt, and anger which the patient is really hesitant to utter.
Part of that is because our schools, our seminaries, do a good job about teaching us to do funerals, but there are very few seminaries that teach death and dying. They ought to and they need to. The training I had was courtesy of the United States Air Force as a chaplain there.
There’s also another thing that we see: If these things are expressed, the patient feels judged or condemned. We’ve all as chaplains had patients tell us, “I feel like I can tell you anything.”
I say, “Your pastor, I understand, is visiting?”
They look kind of sad and say, “Well, I’m afraid that he or she would judge me for what I really feel. I feel like I would be judged for the doubts that I’m beginning to have.”
We want to – as spiritual caregivers, as faith leaders – you want to somehow work to where people are not afraid to talk to you. I try to reconnect people, by the way, with their pastor. I say, “You know what? Your pastor would not be surprised to hear some of the things that you’re telling me because of their experience and their ministry.”
Often the caregiver is overburdened with the exhaustion of constant responsibilities before the referral is even made to hospice. Most of the families’ resources, family, and friends are worn out and concerned at first. Friends tend to return back to their own lives toward the end. Doctors, family, and friends, like I said, sit a little further on the rings away from the patient.
Loss of control. That’s a big one. Patients often feel betrayed by their bodies. They’re no longer having any control at all over their lives.
And so the loss of a control is a big thing. They’ve been put through endless tests, they’ve been put through treatment. They’ve been put through all of that, and many of those, by the way, have not been adequately explained to them. The essence of hospice care is to give the patient as much control over their lives as possible. That includes such things as when to sleep or when to have a bath or when to eat or what to eat. Those are big things.
Giving them control over their lives, and we try to do that. They can be surrounded by their things, their loved ones, their pets, all of that.
Let me give you some helpful advice about helping a friend who’s dying. These are just things I’ve learned over the years.
The gift of presence. Many of them feel alone. They feel isolated. Visit not just once, but throughout the time. You can rent a movie, bring popcorn, play cards, Monopoly, whatever. Sit with them. Don’t be afraid of silence. You know you’re with someone that you’re comfortable with when you don’t have to fill every silence. I tell patients sometimes who try to talk a little bit, “You know what, you don’t have to entertain me, I’ll entertain you.” You can sit in silence, and it’s OK. Your presence says, “I’m willing to walk this road with you.” In the Air Force, we call it the ministry of presence. It’s one of the most important things we do. In the most difficult times of life, people won’t remember what I said. When there’s a smoking hole and the whole crew is dead, they’re not going to remember what I said, any prayer, any religious platitude, or even anything I could give them. You know what they remember? “Chaplain, you were there. You were there for us. You were there for me.”
Never, never minimize the ministry of presence you can give someone. It’s just very, very important.
Be a good listener. Respect your friend’s need for time alone. Realize it may leave them with very little energy. The key word is sensitivity: Being sensitive to what their needs are. I give people permission – and I know all of our chaplains do – I give permission. I say, “Hey, I stopped by to see you. If it’s not a good day, you kick me out of here any time you like. You can just say it’s not a good day.” I say, “All right, I’m praying for you, I’ll see you soon.” And so the idea of sensitivity, what the patient’s needs are.
I like what Gene Lovelace, who’s our – I guess you’d say our senior chaplain, he’s been here longer than anyone – Gene is on vacation this week. Gene used to say, “I walk into the room asking myself, ‘If I was laying in this bed, what would I want from me?’”
It’s the golden rule basically, right?
Being a good listener. Your friend may want to openly discuss their illness, they may want to avoid discussing it. Again, the key is sensitivity, taking people where they are and where we find them. Allow them to talk about the illness at their own pace. And by the way, you can be a safe harbor. Don’t force the issue, either. Desire to really listen without criticism, without judgment. Learn about your friend’s illness. You’ll be better equipped to help your friend and more understanding.
Avoid the temptation to instruct or set some artificial expectations. Think of yourself as one who walks with, not behind, or not in front of a dying person. Never say, “I know just how you feel.” Have you heard people do that? “I know just how you feel.” You don’t. You don’t.
Other comments like, “This is God’s will,” or “You’ve had a good life.” They’re not constructive. Instead, they make a difficult experience even more difficult. Simple words of love are best.
How else can you help them? You can do practical things. Often help is in short supply. Preparing food, washing clothes, cleaning the house, driving to the doctor, setting up an order to give a patient’s primary caregiver a break.
Stay in touch. If you’re unable to come because of distance, call. Be brief, by the way. Write a note, express love, reminisce about the great times you shared, how much you treasure them. Avoid sending generic cards. Make it personalized and that kind of thing, with a heartfelt message. Another great thing is an audio tape or video tape, letters, those kinds of things.
How else can you do it? Well, get support for yourself. This is difficult work, by the way. Loss is difficult. Someone you care about deeply is dying and will be gone. Odds are you’ll need some support, too, for your own feelings. It’s amazing what feelings come up as you minister to others. That’s the reason all of us try to do self-care. In fact, if you don’t, you don’t last doing this very long. So self-care is very, very important. See that. Explore your feelings. Find a support for yourself, a safe place to talk. Be sure to eat, rest, exercise.
Realize your limitations. You may not be able to do everything. And if you’re not, it’s OK. You may want to learn from the situation. You know, “Why am I so uncomfortable with this?”
I had a conversation just the other day with a doctor who told me that he’d visited patients and here’s what he said: “I visited a minister who’s terminally ill. Chaplain, how come folks who say they believe this isn’t all there is, and there’s a heaven to gain, how come they are so uncomfortable with dying?”
My quick response was, “Well gee, doc, everybody wants to go to heaven. Nobody wants to die.”
It’s not where we’re going, it’s the process that we probably fear. I said, “Mind if I tell you something?”
He said, “Sure.”
I said, “The worst patients I’ve ever had were a doctor and a nurse.”
You’ve got to tease doctors every once in a while. He said, “Really?”
I said, “Yeah. Because the doctor wants to control things. The nurse wants to control things. It’s an amazing thing. They’re in there questioning, ‘Does my doctor know what I know? Does my nurse know what I know?’ Questioning things.”
Don’t abandon your friend in discomfort. Write. Call. Let them know what the situation is.
But never, never forget that just the idea of being and of loving someone and that kind of thing is so important. Don’t abandon your friends. Embrace your own spirituality, face that part of your life, and express it in appropriate ways. Again, the key word is sensitivity. They don’t need a sermon, you know. Just sensitive, caring, loving them – all of that kind of thing is just very, very important to do. Help and hope and healing.
After the death, you might certainly mourn, because we all do that. Mourning, too, is a part of life. You’ve got to mourn if you’re going to be whole again. You cannot feel without expressing grief, and realize that getting over grief is not an event. It’s not something that happens and we just go. It is actually a process and it takes a while. Be patient. Be tolerant with yourself, and don’t ever forget that certainly a death brings changes in our lives.
(Speaker points to illustration on screen)
This is something that Gene and I worked on together. He drew it up and I put it on a slide. Patients go from an outer work all the way to an inner work. Outer work to inner work, and then transition. There’s terminal diagnosis. There’s life review and reflection. Relationship mending, we hope, happens. Sometimes it does and sometimes it does not. You hope for that and pray for that. There’s a withdrawal. There’s a sleep/rest – they seem to be sleeping and resting more. There’s NDA (near-death awareness), a surge of energy as the task is completed, and then death/transition.
Now, some heart advice. These are just things from my heart to yours. Helping a dying person: Often a dying person is reserved. Often they’re insecure. They’re not sure of your intentions when you first visit. It’s an amazing kind of thing. People seem reticent to do anything, to talk to you. Don’t feel that anything extraordinary is supposed to happen. Be yourself.
Often a dying person doesn’t know what to say, and they don’t sometimes know how to express themselves and to say exactly what they mean. People close to them often do not know what to say. Once you establish some trust, the atmosphere becomes a little more relaxed. Encourage the person to feel free to express their feelings.
Let them talk to you. Don’t be afraid to be silent and let them speak to you. Sometimes as clergy, we want to fix things so badly that they say a word and we jump right in. “Well you know in John 14…” And we go right into the sermonizing mode, you know? You know what happens? They quit talking and now you’re doing all the talking, and you come away and say, “Boy that was a good visit, I really showed him how to think and…”
Noooo. Beware of meeting your needs and not the patient’s needs. They’re at their most vulnerable here. Use some common sense. Treat them considerately. Don’t take things personally.
Humor is appropriate, but you have to know someone, by the way, to do humor. You have to establish some rapport. You have to have something with someone for them to do that, and sometimes, it’s fun for them to laugh at themselves. Sometimes, they can laugh as well, and it’s OK. It’s all right to do that, but again, it has to be appropriate.
I can’t beat the drum enough: Avoid the temptation to preach and be judgmental – and feeling, by the way, that you must respond to everything that is said to you. Sometimes you feel like you have to respond. You don’t have to respond to everything.
Show unconditional love. A dying person needs unconditional love and to be released from all kinds of expectations. Realize as you look at them that they’re just like you: same needs, same desires. What would I want from someone if I was laying in this bed, just like this? What would I most need? What would I like? Show this by touching them and looking in their eyes. You want to check with staff before you massage a cramp or something like that. You don’t assume anything. You want to know about things.
And then, what we often forget: the dying are losing their whole world, their house, their job, their relationships, their body, their mind, their future. They’re losing it all. And when you’re losing everything, all of the losses that you and I can ever experience in life are joined together when we die, so how can anyone dying not be at some time sad, panicked or angry?
Our culture does not give people very much perspective on their thoughts, emotions, and experiences, and many people feel somewhat cheated and frustrated and angry, especially since no one seems to want to comprehend what their heartfelt needs are.
Hospice pioneer Cicely Saunders once asked a patient what she needed most from those caring for him. Her reply was, “For someone to try and understand me.”
Often, this question comes up, and I’m just going to share it with you. These are my feelings. Should people be told they’re dying? My reply is, “Yes.” I believe that. Again, that’s going to be up to family and how people approach that – as quietly, kindly, sensitively, and skillfully as possible. Many times people think they’re protecting someone, but they live in this body and they already know that last week they could walk and this week they can’t. Last week they could do this, this week they can’t. The person usually knows.
In fact, Kübler-Ross said most if not all patients know anyway. They can sense it by the changed attention, by the new and different approach people take to them. But most patients seem to wait, however, for the doc or the loved ones or someone to confirm it. If it doesn’t happen, usually people who are dying think that they then must protect the family. What you actually get is the patient is over here trying to work through this on their own. The family’s over here, trying to work through this on their own. And so, instead of meshing together, you get each one trying to protect the other. They won’t talk about it. It’s the 900-pound gorilla in the room and no one will even speak to it.
Anxiety. No peace.
Sometimes you find people will hold on to life and they’re afraid to let go and die and it’s not always a faith question. Sometimes it’s unfinished business, whether it be guilt or anger, or just needing to make things right with another person. Without all of those it’s hard to have a peaceful death. I had a patient ask me one time if it was too late to heal all the pain that had transpired in their life. I told them no, it was not too late. In my belief it’s never too late for forgiveness.
How do you help someone say goodbye?
Family and friends learn to let go of a dying loved one, and if they don’t, one is brought great heartache and does not die peacefully. I’ve had patients tell me, “I can’t die yet.”
I say, “Why?”
“My family is not ready.”
My family is not yet ready.
And so they struggle to hold on and all of this kind of thing because they’re concerned about the family. And so learn to do that: verbal assurances for the patient to die. “Dad, I love you. You’ve been a wonderful father. Thank you for everything you’ve done for mom and for us kids. It’s OK. We’re going to be all right and we’re going to take care of each other. We’re going to take care of mom. It’s going to be all right.”
What if they’re not really conscious? We get asked that all the time. We could all tell stories the rest of the day on how people hear, for the last thing I lose in my life is hearing. Hearing is powerful. When I don’t have enough energy to talk to you, when I don’t have enough energy to squeeze your hand, I hear. I could tell you stories the rest of the morning, everything from concussions and everything else – people totally out of it, and yet they could tell you what they heard and that kind of thing. We hear. And so words of comfort and words of love, we hear those. Compassion. We hear those.
And certainly a lot of people die in a state of semi-consciousness, or unconsciousness. Even comatose patients hear.
Helping the living. Within four to six weeks, family and friends have returned to their normal lives. Not so for the grieving. Three to six months are probably the worst times for survivors as the numbness wears off and they face absolute, raw pain. Difficult times.
Church. When my son was killed, I changed churches. Every time my wife and I walked into that church, my son was no longer with us. I couldn’t sit where we used to sit. We went to the back to look for a new place to sit. We looked around at each other. Our son was not there, and soon we were a bawling mess. We slipped out the back. My wife would have almost a panic attack going to church because of the grief.
Birthdays, anniversaries. They’re tough. I still can’t go to church on Father’s Day. I just can’t do it. My wife can’t go to church on Mother’s Day. She can’t do it. Why? Honoring fatherhood and motherhood – we’re a mess. So we skip the service and hope folks will understand and forgive us.
Some of these things I just want to share from my heart. If there’s anything that we can do to join hands with you to care for others, we’re all here. I thank you for your time, which is a precious gift today, and for allowing me to share some things with you.
Chaplain Allen Withers joined Alive Hospice in 1996. Born in Nashville, he grew up in Hermitage First Baptist Church. He attended Middle Tennessee State University and later joined the Air Force, becoming an aircraft loadmaster. After leaving active duty, he graduated from Baptist College in Charleston, South Carolina, where he pastored for several years. During his seminary years he was assigned to the 94th Airlift Wing at Dobbins Air Reserve Base before entering the Air Force Chaplain Candidate Program. After graduation from Temple Baptist Theological Seminary, he was commissioned as a chaplain in the Air Force Reserve and reassigned to his old unit: the 94th Airlift Wing. He has served churches in South Carolina, Georgia, and Tennessee as an associate pastor and senior pastor. He has been married to his sweetheart, Paula, for over 39 years.