Article Figures & Data
Tables
- Table 1.
Themes that were most commonly discussed by participants who completed the PDQ interview:N = 19.
THEME NO. OF PARTICIPANTS Marriage 13 Love of their spouse 4 Children* 16 One’s childhood 1 Working history† 19 Religion • Very religious‡ 1 • Not very religious‡ 5 • Moderately religious‡ 7 • Non-traditional form of religion 1 • “Have lost my faith and am finding my way back” 1 • No religious belief 4 Accomplishments • Having a good personality 3 • Being a good parent 5 • Raising good children 4 • Doing good for others 5 • Making a good family life 7 • Giving back to the community and friends 5 Messages to others • Work hard 3 • Express your love for those around you 6 • Do not take others for granted; people can change 5 • Set an example; do what is right 5 • Give thanks for life 4 PATIENT* REVELATIONS: WHAT PARTICIPANTS SHARED DURING PDQ DISCUSSIONS Patient A She is a southpaw and wants us to know this so that things are placed properly by her bed. She has always worked hard from when she was a teenager on, eventually working in elder care, which gives her insight into what she wants for herself now. Her biggest accomplishment is being left with the feeling that she is a “nice person.” Because she cared for an elderly parent with cancer at her home, she is grateful to be at Algonquin Grace Hospice where she will receive the same loving care Patient B For her dignity, she is doing more for herself. Because just 4 weeks before, she was still caring for herself and driving; the sudden change to dependency has been a hard adjustment. It is hard for her to ask for help, and she wants at least to try. She wants her room to be quiet, and for things to be done quietly and slowly. She wants to be allowed to sit and let memories rise into her mind. She used to be fastidious about her grooming and spent time each day on that task; however, now a good start to the day would be sitting quietly with a good cup of coffee. She is not afraid of dying as long as the pain is controlled. She was always happy and contented, and wants to live her life out that way Patient C It has been “beautiful” coming to Hospice, not having to worry about anything. Sometimes she thinks she gets too much care because she wants to still do things for herself. Because she immigrated to Canada as a young person, she has worked hard to build a good life for her family. She misses her husband who died some time ago, but feels there was a reason for his death, as there is for her; however, it is not for her to figure it out. Because she was always forthright with her children, she will die knowing they are clear about what is right and what is not Patient D In spite of all the visitors she has, she is actually a private person who likes alone time. Now that she is faced with her own mortality, she is able to be the “bad guy” and ask people to leave, and generally be more vocal and opinionated. The worst thing that could happen to a mother happened when her young son died without a clear diagnosis—after that, it made parenting all the more precious. And seeing how her children do as parents makes her so proud she could shout it from the rooftops. She lost her faith after her child died, but it is gradually returning. And although she is not afraid to die she feels like there is more for her to do. Doing the “end-of-life thing” at home is overrated and, in fact, she now no longer wants to die. But when that happens, she wants it to be peaceful in the way her dad had died Patient E She appreciates that the staff check on her and show no impatience no matter how often she rings. Because her husband died at Hospice, she knows what to expect. After the initial diagnosis, she had decided not to pursue further investigations or treatments because of her advanced age. She wants to leave a message for young people to work hard and persevere in their relationships. She once had a disturbing dream about dying, but a minister reassured her and now she knows she is in God’s hands Patient F He jokes that the staff is right on top of things, having picked him up off the floor several times already. He admits that he is hard to get along with and “crusty,” so giving up his independence has been tough. He has been married for 60 years and considers this, as well as raising good children, as his biggest accomplishment. He says he has no idea of what happens after death but will rest assured that his wife will be okay without him. He especially wants his family to know how much he loves them Patient G He feels like he has been on a merry-go-round following the diagnosis, with everything changing in his health, his interests, and his abilities. He worries about his lack of interest in things and that he will end up with nothing to do. He sees that as the end of life. As a result, he finds himself lashing out at those closest to him; even his voice is so different that he does not recognize himself Patient H She has found that the best way to cope is just to cooperate; that going from healthy to dying so rapidly leaves no other options. It is hard for her to give up control, having been a working single mother and needing to be in charge. She needs explanations of what is happening so that she “freaks out” less. She does not feel like she is done with life Patient I She values communication, so that she knows what is happening and so that she can prepare for what is ahead. Her faith has underlined the significance and richness of life, to not take life for granted. She wants us to know she has a fear of the dark and likes a light left on. She looks back on her life and work and is grateful that it allowed her love of people to shine through. She expects to see her mother and husband in heaven after she dies and therefore is currently at peace Patient J He misses his independence—the little things like getting to the bathroom or having a shower. He appreciates the staff allowing him to do what he can. As there has been some improvement since coming to Hospice, he hopes he can even go home for a time until he deteriorates further Patient K He enjoys company and having people to talk with even though he lives alone. He considers his beloved dog his child, and what will happen to the dog when he dies is his biggest worry. He believes that after you die, that is it. He is proud of having been a good advice-giver to others, and wants people to know that if you do not like what you are doing to quit: life is more than just about money Patient L She can be “crusty” and wants to be treated fairly. She is not afraid to speak up when she wants something. While she knows it was the right decision to come to Hospice, things have happened so fast and it has been a tough adjustment. Because she had a broken home, it was important to her to make her marriage work. She is proud of her connection with her children, grandchildren, and great-grandchildren. She has sorrow around a son she does not see. She is saddest during the night when she is alone. She believes that when you die, you die; so because she’s made all the arrangements for after death, she is sad but accepting Patient M He wants to be treated as a man and not a child. And does not want to be treated in a “sugary” manner. He has been independent, living in the bush and not needing a lot of people except his wife. He feels trapped by having to ask for things even though the staff is very responsive. He recalls his rural life growing up with his grandparents when his dad went off to war, so he felt closer to his grandfather as a result. He fell in love with his wife when she was just 12, so had to wait until she was 18, and they have been married for 54 years. There are things about his work in emergency services that still haunt him. His biggest accomplishment is raising his sons and trying to teach them something each day, like his grandfather did. He thinks that there is some sort of god, and although there’s a soul that goes somewhere, mainly when you’re dead, you’re dead. He would like to be remembered for doing the very best that he could Patient N He has various likes and dislikes: how he likes his food, his position in bed, what kind of bath. He loves company and is proud of his sense of humour. He wants the facts and to see the medical reports for himself. Some of his best years have been recently, having begun to live with his new love. It helped him recover from the loss of his wife of 30 years. He loved being a dad and loved helping people, especially displaced people after the war, helping them get settled and get work. He thinks it is important to set an example to others about love and not taking relationships for granted. Having his XX stay the night here with him means the world. He sees God as creating the world we live in and then He checks out and leaves it for us to work it out. He has resigned himself to dying and feels at peace with God and hopes God is at peace with him Patient O She wonders if she should have pushed more to find out about her symptoms, but on the other hand never wanted to get old and disabled, so she asked to avoid any “heroics.” She is not one to get into a “fuss or dither” and does not worry about the future. Her parents both died young, so she relied on herself. She is proud that she never got up in the morning with any regrets. She feels ready to go when the time is right and what happens after that is not her concern. Her only advice for others is to be nice. She says she is not here to judge others; she has lived her life, chosen her route, and it is up to others to do theirs Patient P He likes to have company to talk with even though he has not always been someone who likes company. He has been a bachelor all his life and considers his dog his family; that is who he worries about when he is gone. He says he is not religious and believes that when you die, that is it. His advice to others is to find what you are good at and enjoy it: it’s the only way to have a satisfactory life PDQ—Patient Dignity Question.
↵* Owing to the sensitive nature of the material, only nonidentifying excerpts from the summaries have been included.
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