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What do you say to a loved one just diagnosed with terminal cancer?

122_0562April 13, 2010

Maureen Keeley and Julie Yingling are authors of the award-winning book, Final conversations: Helping the living and dying talk to each other. Through interview data collected from some of us who have gone through the experience of knowing that a close relative has received a terminal diagnosis, Maureen and Julie provide a table of contents that introduce the important topics they address in the book.  Among these–telling our loved one, “I love you.” While saying the words is important, giving clear messages that leave no doubt about the love that has been shared is emphasized in the authors’ summary of what interviewees told them. Telling a parent that she is loved, that you will do your best to live the kind of life she would be proud of, and that you are grateful for the time you had to to share together…these are messages that we want to say explicitly while we have time to do so.

Keeley and Yingling remind of us that a terminal diagnosis does not mean that your loved one is dead–yet. He or she probably wants to go on taking care of everyday business as long as possible. So when your loved one says that he wants to hear about your life, he really means it. There may not be a lot of opportunities left for you to tell him about the everyday and ordinary parts of living.  What did you do at work? Who did you talke to? What did you eat when you went out to dinner last night? Where are you planning to go on vacation this year?

Simple joys…baking cookies for a loved one and eating them with a cup of herbal tea or coffee. Sitting near a window that looks onto a view that is a favorite one. One of my aunts that I felt very close to died from ovarian cancer. I remember her wanting to continue to do some work from the office…right up until she died. Her employer brought some of the bookkeeping to the house and she worked on it when she felt like it. We didn’t say to her, “Why are you spending your time that way?” She wanted to do it. That was enough. An uncle who died from lung cancer wanted to go on a camping trip. It meant getting a trailer that he could be comfortable in so that my aunt could take him on that final campout.

It also may be the time to talk through some things that have been avoided in the past. We don’t have just positive feelings, even about the relatives that we feel close to. A conflict long buried might be on our minds. An invitation to a loved one such as, “Do you want to talk about it?” may open the door to clear the air. We shouldn’t force the invitation, but provide a space for a conversation that many times will be a relief to the living and the dying.

The authors also emphasize how important it can be to say that a connection to a loved one lives on…even when they do not.

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Author: Roxanne

I have always loved to learn. After years of trying to pick a major as an undergraduate, I met a professor who guided me to graduate school. And from graduate school, I learned that I could always go to school and keep on learning. And so I have...

28 thoughts on “What do you say to a loved one just diagnosed with terminal cancer?”

  1. Pingback: physical therapy
  2. Pretty insightful post. Never thought that it was this simple after all. I had spent a good deal of my time looking for someone to explain this subject clearly and you’re the only one that ever did that. Kudos to you! Keep it up

  3. I have never been in this type of situation, but I feel like I need to start learning how to deal with it. My parents are now in their mid-sixties and I know that death is coming closer every day to seize them away from me. Just recently, my dad announced his retirement. “Only old people retire,” is the thought that went through my head. That’s when it hit me that my dad is getting old and is reaching his end-of-life stage. I know myself well enough to know that I would not be emotionally prepared to talk to him while he’s on his deathbed. What do you say to someone who is dying? That is why I decided to reserve Keeley and Yingling’s book from the library to find out. Now I will be prepared for the hard times of the future while still enjoying the good times of the present.

  4. Luckily, I have never had to experience one of my loved ones being diagnosed with a terminal illness, nevertheless, I can express what I think would be the correct protocol in dealing with the illness. I agree with the author that verbally expressing love is essential, nevertheless, I also think that being supportive and open minded is imperative also. I think that our loved ones do not want to be wrote off as dead prematurely, so behaving as normal as possible, while providing care, is important. Sometimes people make the mistake of treating their loved one differently which causes the patient to feel bad and submit to the illness. I have learned in interpersonal communication that non verbal cues are extremely more effective than verbal communication; therefore, our actions speak louder than our words. I think that providing an open arms and ears for emotional support, along with, continuing in routine daily activities will result in the last days being enjoyable.

  5. My cousin was the star running back for Buchtel High School in my hometown, Akron, Ohio. When we were entering our senior year, he was shot in the back at a graduation party. When my family went to the hospital, we were in extreme fear. He had the potential to play college football and our family was worried that he would no longer be given that opportunity. After going into emergency surgery, the doctor told us that it was a possibility that he would be paralyzed from the waist down; however, he referred us to a physical therapist that could possibly help us. The hope that the physical therapist gave our family demonstrates why uncertainty can be good at times. Although my cousin is still paralyzed, at that time we were able to cope with his injury because we still had hope. As time has progressed, we’ve realized that the chances of him walking again are slim, yet, the shock of him being paralyzed had passed, and we are able to cope with reality better. We have become his support system, which is important when dealing with permanent injuries. My cousin still gets very upset at times when watching football and when he is not able to do some of the things his friends are able to do, however, he still attends physical therapy sessions with hope of living a normal life again. Uncertainty is not always bad; in fact, it gives some people, like my family, the drive to keep moving forward each day.

  6. Although I cannot imagine having to go through this situation, I have been in it before, I just don’t remember it. My grandfather passed when I was four years old from ALS (Amyotrophic Lateral Sclerosis), commonly called Lou Gehrig’s disease. I asked my father about this and he said that my Grandpa just wanted to go on with his life the way he had for so long, and that he did. I know my Grandpa got very sick, very fast and he was only alive a few short months, after learning he had ALS, before inevitably losing the fight to ALS. My Grandpa was a big man before the disease took over – around 6 foot and 240 pounds. ALS is a progressive neurodegenerative disease and fatal – seeing pictures of him towards the end of his life is very sad when comparing them to pictures even a year before. I know I told him, and showed him I loved him all the time as did the rest of my family – along with respecting his wishes.

    After this story, I believe you should try to stay positive and be thankful for the time you were, and are given. Because it is terminal, the outcome, sadly, is known. Therefore, you should respect the wishes that the person has – even if you don’t agree. This situation, in my opinion, goes along with our section in class about Identity. It may take the person a while to realize and process what is actually going on. Going through the stages of supernormal identity to restored self to contingent personal identity and finally to salvage self – might be what a person needs to do in order to come to good terms with what is happening to them.

  7. When dealing with any serious illness or disease, I believe that we as family members and friends need to take into consideration the fact that our loved ones are still human and that the diagnosis is not “the end”. People have tendencies to want to treat the person like a baby or like they cannot make their own decisions and we have to be mindful not to do so. I feel that we should let the person talk about their illness when their ready but always reassure them that we’re “all ears” whenever they need to talk.

  8. I cannot agree more when Keeley and Yingling say “a connection to a loved one lives on…even when they do not.” This is a very difficult concept to comprehend while dealing with the death of a loved one, but important and meaningful after they pass. It also is nearly impossible without communication. Family and friends who have a loved one diagnosed with a terminal illness must realize that these loved ones experience different transitions of identity based on their type of illness among many other things. This often makes it difficult for family and friends to know how to respond because the transitions and different identities may be hard to distinguish. Although it differs among various circumstances, communication allows for family and friends to determine which identity their loved one is experiencing or get to the point where it doesn’t matter because they have become so close. One of the most common ways to do this, as mentioned in most of the previous blogs, is to continue conversation as if everything were normal. My father was diagnosed with cancer when I was 11 and passed away when I was 18. During the 7-year span that he battled the dreadful disease, we maybe talked about it five times or less. The majority of our time spent together was doing things that we would normally do if he were not sick. This allowed for a lifetime of memories that I will be able to tell my children and grandchildren as well as reminisce on to help with my own coping.

  9. One very important aspect of communicating with a loved one just diagnosed with a terminal illness is to maintain the normality in your everyday interactions with the person. Following diagnosis, these interactions take on a lot more significance to both individuals because you know there is an ending point in sight. When I was in high school my grandmother was diagnosed with terminal cancer and my fondest memories with her are still our daily conversations we would have after school regarding how my school day went and the latest updates on my friends and activities. She had always been interested in my life, however after her diagnosis I felt that I owed her all the details I could provide because these short stories made her so happy. After she was diagnosed, she was quick to move to the contingent personal identity stage and confront the consequences of being diagnosed with a fatal disease. She knew she was not the same person and her ability to do many things was disabled, however the everyday things she could still do took on so much more significance. In her final months, she reached the stage of salvaged self and knowing and seeing that she was on good terms with the situation made it easier for myself and my family to be supportive and handle our loss.

  10. I agree with the idea that Keeley and Yingling brought up regarding our loved ones desire to continue living life as normally as possible, even after a terminal diagnosis. When my friend’s mother was diagnosed with lung cancer, it was very difficult for her to do every-day things with her mother, as the new illness was very salient to her and she wanted to talk more about it than her mother felt comfortable with. Regardless of our own feelings, our loved one may not view their diagnosis as something that they wish to shape their current identity. It is important to respect the family member’s wishes and not attempt to push them to make their illness a larger part of their life than they want it to be. Identity negotiation regarding illness is a personal process that evey individual must go through, and as these blog posts show, what is most important is that the family member knows that they are loved and supported.

  11. I have never experienced a close relative or friend getting diagnosed with a terminal diagnosis, but I can imagine that it must be a feeling of emptiness and hopelessness. I feel that at that moment, it is so important to disclose to the loved one who is dying, anything that is on your mind. You may not have much longer to talk to them, and you don’t want to have to live with regrets for the rest of your life. Plus, by disclosing your feelings, you create an even stronger bond. Disclosure enables trust between two people as well as a deeper connection. I know that I would want to share my deep feelings with someone who is dying, so that I know that there was never any doubt in any of our minds, how much that person meant to me and that I will always be thinking about them even after they pass.

  12. I believe through one’s own life experiences is how you learn to deal with a situation like this. My question however is, why treat only a person with a terminal illness like this? Why not treat everyone, ever day like it is their last. Because the truth the matter is that it might be. The human brain has evolved to predict, and it does so by identifying patterns, but one day there may be a shift in the pattern of your life and something traumatic may occur.

    That is why is propose to all, that as of today, you don’t keep anything for special occasions, because every day you live is a special occasion.

    Use your crystal goblets. Don’t save your best perfume,
    use it every time you feel you want it. Remove from your vocabulary phrases like “one of these days“ and “someday”.

  13. If you like to talk about Source of Health Care and Medical Information. Some very good info and pretty cool people!

    You might like a General Hospital Information forum also:

    http://www.generalhospital.org/

    They also have money contests that are free to join.

    Just wanted to share.. All the best

  14. I think Dr. Parrott does a good job of expressing the idea that the patient doesn’t view him/herself as dead so we shouldn’t treat them as so. The last thing a patient (of any diagnosis) wants to feel is pity or somehow different from what we perceive as “normal”. As someone who has been diagnosed with cancer I believe that initially it is the patient’s family and friends that have the most trouble maintaining the same image of the patient.

  15. Seeing a loved one struggle is never an easy situation, but living in the moment, I believe, can help ease the sadness to come. Saying “I love you,” and carrying on normal conversations can help bring optimism to your loved one. In the recent film My Sister’s Keeper, the mother was so focused on her daughter’s disease and fighting the Leukemia, rather than accepting that her daughter was ready to die. All her daughter wanted to do with her last days was to be with her family and go to the beach. She didn’t want her parents to worry about her when she was gone and she was tired of seeing her sister only seen as a medical tool used to help her fight this disease. The times spent “on the beach” are the memories the families remember the most. You must stop focusing on the terminal illness and continue living life while you still have time.

  16. My Grandpa is currently in the hospital dealing with cancer. In general, my family’s communicative approach appears to be: “tell him what he wants to hear.”

    My Grandpa is religious and I am not and he tells/asks me to pray for him. Although I am not religious nor do I believe in God, I do pray for him. In doing so I remain honest however, I do not explain that I am praying to “his God” because that isn’t what he would want to hear. How do I know this? Well, I suppose relational closeness is very important in determining what you believe a person “wants” to hear.

    If I don’t know what he “wants to hear” then I talk about what any family talks about except subjects relating to politics, religion, or the diagnosis. Keeping the mood of the conversation light and joking, unless my Grandpa steers it in a different direction. Overall, I tend to go with the flow. (not aggressive and always supporting) Relational dynamics play a huge role in a person’s ability to follow through with this method–effectively. In my opinion, effectiveness in this case is measured by not upsetting the person who received the diagnoses in conjunction with the ability raise their current mood or outlook during the conversation/interaction.

  17. I feel this is a very important topic and one that we should be aware of for that ‘Just in case’ reason. Knowing that our loved ones are diagnosed with a terminal disease, be it cancer or something else, is not going to be easy news.However, after reading this blog it brought light on the subject and knowing what the family member that is diagnosed with this horrible disease is thinking as far as needing to hear about loved one’s lives, then this could make it easier for the family to cope as well. Telling them how much they mean to you and how much you appreciate them is something anyone wants to hear before they pass especially from family members. I think hearing this from the ones closest to you would be one of the best ways to cope for both the patient and the family.

  18. This question covers a subject that is very difficult, but also very important. Of course there is going to be a lot of change and adjustment when a loved one is diagnosed with terminal cancer, but reminding a person that they are loved and that they have your full support are some of the best things you can do. Another important point is that a terminally ill patient is not dead yet. People don’t want to be constantly reminded of their condition, so carrying on with normal activities can be very helpful.

  19. I agree with Keeley and Yingling when they say that “a terminal diagnosis does not mean that your loved one is dead–yet. He or she probably wants to go on taking care of everyday business as long as possible.”
    If I came in contact with someone in my family that was diagnosed with a terminal cancer I would try to stay positive and think of the good times we shared. I would also try very hard to keep doing things the same as we always do them. The movie ‘Step Mom’ starring Julia Roberts deals with this situation because the mom doesn’t know how to go about telling her children and when the children do find out they do as much as possibly to keep their moms spirits up.
    I think the extent to which I would talk to my loved one about this illness would depend on how much longer the person has been told they have to live.
    I would continue to support my loved one and help them keep their life as normal as possible.

  20. This question really sparks my interest because my mother and father were both diagnosed with terminal cancers. It was very hard to figure out what to say to them or what would comfort them, but as Roxanne stated, they mainly want to go on living and enjoying every moment instead of letting the focus of conversation be their illness. I lost my father 2 months ago and I wish I would have asked him the question Roxanne poses, “Do you want to talk about it?”, because I feel like sometimes his pride got in the way of that discussion. My mother has become more comfortable with talking about her illness but definitely prefers to ask me how my day went than talk about her being sick. Everyone is different and I don’t think that there is a right or wrong thing to say to a loved one with a terminal illness; it’s up to your discretion based on your relationship and how they present their needs for comfort or companionship. One thing is for sure though, never put anything off that you want to say or do with your loved one, because you never know when it will be your last chance.

  21. I believe the way to go about talking to a loved one diagnosed with cancer really depends on the person and their personality. While some may prefer to focus on their disease and their uncertainty and discuss ways to cope with their situation, others may prefer to ignore the situation and live their last days as if nothing is wrong. I think the best way to talk to the loved one is first to kind of “test the water” with the topic of their illness, and then do your best to determine if it is something they want to talk about or not. Nonetheless, I believe it is important to let them know how much they are loved. Likewise, if there are any regrets you have or outstanding problems in your relationship, I think it is best to clear the air between the two of you, so that you may both rest in peace.

  22. Even if the cancer is not terminal, it doesn’t mean it isn’t serious as well. No cancer can be looked at as easy. Everyone deals with things differently so I don’t think there is set way to treat a person who has been diagnosed with cancer. I agree that there are definite things you should not say but there is no designated dialogue to have. A person must try to understand and adapt to the level of uncertainty the diagnosed person has about their illness. Also, what a persons spirituality and religious views will come into play.

  23. I’ve been lucky enough to not have to deal with this situation personally. However, my dad had to deal with losing his mom before I was born and several of my friends have dealt with similar losses. I think that a situation like this is one where communication matters most. When it comes to saying “i love you”, reconnecting, and even the patients wishes. It’s not just the family member that must communicate, but also the patient.

  24. I believe the key in this situation is optimism. Focus on the fact that they are here now and in this life anything is possible. Reiterate the good times that were shared and come up with more ways to establish memories. People with cancer are aware of the potential outcomes, therefore they do not need to be reminded. Each second counts which means it should be spent on laughter and love.

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