Talking With David Kuhl: Honest Conversations With Dying Loved Ones
Many people want to connect with their loved ones on a deeper level -- emotionally and physically -- before they die, but how exactly do you do that? And how do you know if that's what your loved ones want?
In 1992, David Kuhl, a doctor who founded the palliative care program at St. Paul's Hospital in Vancouver, undertook a research study to find these things out. For several years, Kuhl recorded the stories and desires of dying people as part of the Project on Death in America funded by financier and philanthropist George Soros, who himself admitted that he was not at his father's bedside when he died. Kuhl's research confirmed what he had seen among thousands of dying patients in his clinical practice: that the most important thing to them was "connection" -- with their true selves, with their children and other loved ones, and with a spiritual something bigger than themselves.
In this sense, Kuhl found, honest talks with dying loved ones are as important to them as medical care. Yet he also discovered that when it comes to deep conversation, many people don't know where to begin.
Q. How did this project come about?
A. We started the palliative program at St. Paul's Hospital in 1988, at a time when AIDS was always a terminal illness. I was providing care for men my own age and I realized I didn't have any understanding of the depth of their psychological and spiritual experience. So I decided I needed to stop and talk to people about what it was like to know that this disease in them would likely cause their deaths. Some were younger; generally, the people I talked to with cancer were older than I was. And I began to appreciate that dying was probably more about the psychological and spiritual than the physical, and that you can't really separate them.
Q. In your book, you talk about a cancer patient named Alice, whose unresolved relationship with her daughter was literally a great source of pain for her.
A. Yes, when I first met her, it didn't seem that it would be difficult to help her get on top of her pain, and then we could discharge her back home. But every day I went in to see her, and despite all the things that the team members had tried, her pain didn't change.
One day I said to her, "I think your pain is in your heart and it's a pain that I can't really change." We talked and she told me that she and her daughter were now estranged because she had told her daughter that she didn't think it was in her best interest to marry the man she was planning to marry. I realized that I had not explored relationships with her, so I did not appreciate the full gamut of what her pain might be. It had to do with the relationship between a parent and a child, a mother and a daughter, and there's no palliative or hospice team in this country that can take that pain away.
Q. Did this revelation alter your relationship with her?
A. It altered my relationship with her and with patients from then on. We could still treat Alice's pain to make her feel more comfortable, but we had crossed over into suffering, not just physical pain. I couldn't change that, but I could listen to her and not reduce it to something physical. And I became more determined to ask my patients bigger, broader questions, which led to doing the research project.
Q. So in your experience, what do dying people want?
A. Connection: connection to a sense of self, to others who love them and whom they love, and to something "other" – God, Buddha, Allah, universal love, something bigger than themselves.
Q. What's the most important thing people caring for their loved ones can do for them when they are dying, besides making sure they're not in pain?
A. What I learned from dying people is that their stories erupt; they can't even really contain them. But often they don't have an audience. So I would say the most important thing a grown child can do is to hear their parents' stories, hear who that person really is and was.
It's the responsibility of parents to make sure their children are heard and seen when they are young. And as parents grow old, they want to be heard and seen. People would say to me after we'd spend time together, "I only wish I had told this story to my children, because they don't really know me and I don't know them. And I'd like to hear their stories, too." People remember things from their childhoods that their parents don't remember, and the things that they both remember, they remember differently.
Q. Do you find that many families have trouble talking at that deeper level?
A. Yes, I think that connecting on an other than mundane, day-to-day basis is often a big challenge for both parents and children. So we start taking care of each other through a conspiracy of silence, and that doesn't serve us well.
It's often the case that it's the child who says, "Oh, come on, Dad, you're going to get through this," because they don't have a history of having had intimate and truthful conversations -- about what their relationship means to them, and the ways they may have hurt each other, and what they're thankful for from each another. We don't talk in those terms -- you know, mutual funds and scores of hockey games and the weather are easier to talk about.
Q. Don't you think we also carry these myths that people who give up sooner will die sooner, and we commend people for fighting death to the end?
A. I think that's a very strong message in the culture, and it's unfortunate that it's such a competitive metaphor because ultimately that's the destiny for all of us. Often, I hear children say, "You've got to fight this, Dad; you've got to keep going." But the person who has the terminal illness has already begun the internal process of dealing with death, so there's a discrepancy in how people perceive what's going on. The metaphor of a battle or a game that has to be fought to win can actually be more tiring for the patient.
Q. How do you suggest that people who feel disconnected with their parents or other loved ones, or connected only at a mundane level, initiate these conversations?
A. Be up front with it. Say, "Mom (or Dad), I really want to know you better and I'm not even sure how to begin. Why don't we talk about your early life -- who you were in your early childhood and adolescence. What was life like for you?" Eventually you can ask, "What's been most meaningful? What's been most challenging? What are you sorry about? What was the funniest stuff? When did you have the most fun?" And you can also ask, "Is there anything you really want to say to me? Or is there something you want to hear from me?" Because sometimes we think that unfinished business is only something that requires an apology or a correction, but I think unfinished business is often an unheard story.
Q. So what about when people want to bring up a buried problem between themselves and their loved ones?
A. You can say something like, "Because I want to be completely honest, I need to tell you that there was a time when I was hurt by you. I wish it wasn't that way, but it is and I think it's come between us. And before you die, I don't want anything between us because I want to love you." Or even, "I'm glad to be sitting here because there were times in our lives when I wouldn't have been."
Q. You say in your book that touching is very important for dying people. Let's say that a man isn't used to hugging or touching his father. How would you advise him to get started?
A. He might say, "I'm just going to sit beside you." It could start with just that. You know, "I'm just going to sit here for a minute and put my hand on your shoulder or my arm around you." And, yes, that will be uncomfortable because it's foreign to them. The parent might also be very uncomfortable with the son touching him, and the son might have to start with his mother because that's easier. And then he could say to the dad, "Before I leave today, I'm gonna give you a hug, too. Is that OK?" It could start like that, just with the coming and going.
Q. What can people learn about living from a dying person?
A. I think we can gain a lot of wisdom if we listen to the lessons they've learned, and learn how to discern the things that are important from those that aren't, and the things we should worry about from those that we don't really need to worry about.
Q. You say that dying can be a time of personal growth, hope, and joy. But I think it's difficult to understand how can you feel hope when you're dying.
A. I can appreciate how that seems like an oxymoron. And if you put all of your sense of being and value in the physical domain, then it's very confusing. But if you see it more holistically, you see in people a process of change, where the hope can transfer from hope for a physical cure to hope for time to be with their family members, hope that they'll have an opportunity to have conversations that are meaningful for them, hope that their sense of spirituality will sustain them until the end, hope that what they believed in was of value to them through that experience, hope of not being alone, hope of having some time alone. People have their own sense of what hope means for them.
Q. You've said that when you, your wife, and her mother were at your father-in-law's bedside when he was dying in the hospital, you were unable to have a final meaningful conversation with him.
A. The hospital staff said to us, "Why don't you go home? He could be here for a long, long, long time." Now I know that, by the way he was breathing, they knew it wouldn't be a long, long, long time. I wish somebody had said, "We're not sure whether it will be a day or two, or even just hours. So if there's anything you want to say to him, or if you want to just be with him or hold him, now would be the time."
So my goal has often been to get the family having more intimate conversations now, because my sense is that when children don't have those conversations with their parents, their grief will be greater after the parent has died. My rule of thumb is: If it's worth doing when someone has six months of life left, it's worth doing today.
My husband died from lung cancer. Still today I regret I didn't handle it all when I was with him right. It was the first time I was ever with someone dying and guess I handled it wrong. I wish everyday I said and did the right thing when I was with him. I assume you have regrets after someone you love dies and always wishing you would have said or done this. It's been over 6 years and it still haunts me.
Not strong enough to carry this burden Husband dying with matasicse prostate cancer don't know how long
My dying mother's last words to me were, "I can see you still are a big, fat slob." I've really had trouble rising above that and trying to remember the happier times. How I wish she hadn't said that to me. After her death I had bariatric surgery and lost 90 pounds. Mom, I'm not a big, fat slob anymore.
My situation is a little different. We were not expecting go lose my dad on that trip to the hospital. He was disguised with pneumonia and the ERmstaff was very positive about his outcome. Once we arrived in hos hospital room the atmosphere changed. The pneumonia had occupied 75% of his lungs. He voiced his okay to be put on a vent. 3 hours later. Specialists were coming in all with bad news. Kidneys shutdownx. Leukemia (which he had been doing very well with, had surpassed acute and was now in blastic mode. Og course, I'm on webmd and questioning why they can't take steps to help him. I do believe if he was 48 and not 78 they wouldve tried harder. My main point is that my father did awake from his induced semi coma. Since he had a ventilator we were not able to have any conversations with him. We could only ask "yes" or "no" questions. I do have a strong feeling that he felt the presence of a higher body near him. At first, I did not want to accept it. But, I'm wondering if this presence eased his mind. We tried very hard to talk t Our dad in positive ways. As. Right or wrong, without any verbal communication with him, we didn't want him yo know thsr he was dying. My dad made a rally for 48 hours he was still vented, but I believe he thought he was improving and so did we. I spent the last night with him, it became more clear to me about 16 hours before he left us that his death was eminent. He really really wanted the vent out. I kept him a bresst of how much time until the dr would remove it. That kept him pacified for an hour or so. We were all present when the vent was removed. We had such high hopes. He began to snore right away! That was normal. The nurse could not wake him. But, he continued to snore for 3 hours. Then the snoring stopped and his breathing became labored. The nurse gv him a sedative. But, we soon noticed the mottling of his skin. We tried putting lotion on it (silly us) and it did help for a brief time. We did talk to him, hold his hands. Softly play his favorite songs, my mom sang to him. I just feel so lost and hurt that he was forever silenced by a vent. I never foresaw that happening to my dad. I'm hoping he knows his bed was surrounded by family at the moment God took him from us. I was so sure he was going home the night he was admitted. I never dreamt when the end came that he would hv no voice.
I am going to my fathers bedside today and can't thank you enough for the knowledge you've shared.
All that you have shared in this article seems very valuable and helpful for me especially as my own dad is declining in health and my mom continues to become more frail. We are close but I think of my older brother who will certainly regret not having come to terms with his and dads relationship, and my dad will suffer as well. What can I do to help them, to somehow bring them together to overcome the wall that seems to be there?
I absolutely loved this article. In July of 2011 I way laid off from my job. Shortly before, my mother was diagnosed with Lung Cancer. My father was also ill as he was a severe diabetic, had heart surgery over 23 yrs. ago, and had a couple of strokes. I discussed it with my sisters and decided to be a caregiver to them both. They were the most loving, caring, affectionate parents that anyone could ask for and would always be there for us no matter what curveball we threw at them throughout our lives. On October of 2011, I found my father unresponsive in his bed. I first felt his wrist and there was no pulse. I then knew he was gone. I hugged him and could feel his chest was still warm but did not perform CPR. I knew he had been in severe pain for a long time and previously signed a DNR several years before. I wanted to abide by his wishes but believe me I wanted to so bring him back to life. After my fathers death, we then had to focus on getting my mom healthier. In my heart I thought for sure that she would beat this lung cancer as it was only a Stage 1-2. She progressively went down hill and died of a broken heart 4 months later in February of 2012. The evening she died, she said out loud in her sleep, I want to go home. I told her to go home to heaven and be with my Dad. She died early that morning. This article was so true when "David" said that the terminally ill people want to be seen and heard. She was a joy to be around during her last stages of life. She told many stories of her life and we all were by her side. We miss them tremendously, but know that they are no longer in pain and are in gods hands in heaven.
Very enlightening and very human...in the end, as human beings, as persons, we are all the same...there is a deeply felt need to know that one´s life has a meaning, that our love for another and one another has value, and our memory remains in the heart of those whose lives we´ve shared.
Regardless of the religous and values and culture difference, I think it is an insightful article that works with many dying people. It can be from Dad to dying son, especially, when the dad almost were absent in terms of caring and love. Likewise, among couples when partner is dying.
I was with my mom,lying beside her,in her own bed holding her hand on her chest,whispering quietly, not to worry, everybody will be alright. To "look for David and John (recently deceased son and son in law), daddy will be alright etc. there was quiet music playing in the room. Just my moms private aide and me. She was not attached to any machines or anything. She quietly stopped breathing after Awhile, I hardly noticed. And I finally whispered to Michelle (her aide) I think shes gone. It was so peaceful.
I wish I had found this article some 24 months ago. My wife of 30 years passed over 17 months ago. This has given me some knowledge to pass on to my children so they don't repeat my mistakes. ...six months or six years left to live, it is worth doing today. Douglas.
Thanks and blessings! This article has wisdom from the heart and is very proper, it applies to every situation and condition. Surely, I will follow most of the suggestions with my father who is in a terminal stage of Dementia/Alzheimer. Peace and love to all who are suffering similar struggles. Bless Camile Peri and all the readers.
Guidelines such as these can be useful in dealing with ALL patients, not just those approaching death.
It's hard to have a heartfelt discussion with my parents because they are either afraid to feel or let others see any of their emotions except anger or happiness. My dad thinks about anything other than what would make him sad & my mother pretends she's not sad. She is at peace with knowing that she will die soon but I think it's too painful for her too think about how much we will hurt. She looked away the time I had tears as I told her I love her & will miss her dearly when she dies but even more importantly is that I didn't want her to suffer. It was just too awkward for her. Hugs? Never with my dad. If he sees that I'm about to give him a hug he responds with a smile "Go hug your mother." She'll give me a hug only if it has a long time since she's seen me. I do know that they love all of their 7 kids but they are just too uncomfortable to either show it or hear it from any of us. They have always seemed "untouchable" both physically & emotionally. I'm afraid of overstepping their boundaries but I want to be able to "touch" them - somehow. This article has inspired me to work my way toward that by first talking about their life's experiences, how they felt about them & the times that I have such fond memories of. .I may be setting myself up for a painful disappointment but but I feel the need to do my best to have them know that I love them without them feeling uncomfortable about accepting it or thinking that I expect them to say anything in return. I would just like to feel that peace
Great Article......My Mom left us this year on Valentines Day......We were Not CLOSE Ever....But in the last Couple of Months we were able to heal all the open wounds and we both were at peace in the end.....I Retired my job and focused solely on her and i and our relationship.....I have so much Peace now...My only Regret is we didn't do it sooner.....It has also brought me and my Kids Closer....
I love this article. It gives permission, focuses on what's real. The examples offer a model for real relationship at such a critical time.
This is an excellent article. It gives insight into things that are hard for many of us to hear but it also gives compelling reasons why we need to do what is uncomfortable. Thanks for sharing this. Much of this article will be remembered and used.
A great read for anyone who has not made the attempt to have closure with a dying parent. Very insightful. Thank you.
Dear Chuck_s, rest assured your mother loved you (and still loves you) very much. If she wanted to communicate some things to you, it was probably her effort to share her feelings or ask you to reconsider some things. You'll have to forgive yourself for those, and her for the communication as it may have been the only way she knew to reach you. As the spirit passes, the person becomes more detached, overseeing and caring/loving. Try "communicating" with her spirit in meditation or prayer; if it's helpful, ask her spirit to guide you in increasing the love in your own heart and life. I feel sure you'll receive positive responses. All best to you!
I wish I could have read this sooner. My mother passed away on 07/20/2009. After she passed I found a letter she wrote to me for me to find after her passing. I said some VERY hurtful things about me and I wish so much I could have talked to her about them. I'm sure when she passed that she did not love me and now I have to live with that for the rest of my life!
My husband with Alzheimer's has just been admitted to pallative care. We don't know how much time we have and unfortunately he can't communicate well now. But I will use your tips and hope that something will get through and perhhaps there will be times he can respond. I have had some of those gifts already. Thank you.