PART 2


Hospice Care Success Stories

This chapter includes success stories in palliative care from across Canada. We begin with Dr. Dorothy Ley's own success story of how she lived her life as she wanted until her death January 31, 1994. The rest of the stories in this chapter are a testament to some of the impact that Dorothy Ley had on the how people receive care in the last months of their lives.


Dorothy Ley's own experience with cancer began in 1983 and became more serious in 1990. For the last three years of her life she went through numerous treatments including surgery, radiation and chemotherapy -- some of it experimental. Throughout this time she chaired a major review of palliative care in Metropolitan Toronto for the District Health Council, continued to sit on various committees, write articles and give speeches, and influence the course of events in Canadian Palliative Care and care of our elders.

By the Fall of 1993, it became clear that further treatment would be more harmful than helpful. She remained under the care of her oncologist and the palliative care team at Oshawa General Hospital. Together they managed her pain and symptoms and gave her the freedom to fulfil a few dreams she still had.


One such dream was to travel to her nephew's wedding in Calgary by first flying to Vancouver and taking the train through the Rocky Mountains. She had once travelled through the Rockies at night and had promised to one day see them by train during the day. Her courage and determination to complete this trip alone still astound some of her closest friends.


Another dream had been to have one more Christmas as she had traditionally celebrated this high holiday in the past. As always, she went to have Christmas Eve dinner with her friends the Oldenziel family. The family had offered to go to Dorothy's home to make it easier for her but she refused. She enjoyed her evening with the family and the evening service at church. On Christmas day she remained alone for the most of the day as she wanted. Many friends called to wish her well and she spent the remainder of the day enjoying the beauty of her beloved home and the beautiful nature all around it. With this dream fulfilled she left the next day for Oshawa General Hospital where her illness quickly overtook her. She had been determined to be at home as long as possible but knew when it was time to get the extra help she needed during the last month of her life.


During her care she always asked to be treated as a patient; not a doctor. She wanted care, comfort and support rather than collegial rapport. With other patients she always served the role as helpful doctor so that they might receive even better service, but for herself she asked to be treated as Dorothy Ley, not Dr. Ley.


The palliative care team at the hospital became a second family to Dorothy. They usually prepare a room for a patient when they know they are coming in. They would have a lazy boy chair for comfort, a special mattress for the bed, a radio, fresh flowers, etc. When Dorothy was leaving after one of her monthly chemotherapy visits, the team asked her if there was anything else she would like waiting for her on her next visit. She replied that balloons would be nice and then laughed. Sure enough, on her next visit there was a bouquet of balloons in her room with pictures of butterflies (the team's logo) and flowers on the balloons. Everyone enjoyed the friendliness that such efforts bring out in people.


Dorothy's pain and symptoms were well controlled even though Dorothy took only tiny amounts of pain medication. Later in her illness she would become drowsy but that was a result of her cancer, especially the cancer in her liver, rather than from her medication.

During her last month in the hospital, Dorothy's condition was very serious and her friends and the palliative care team were not sure if she would be able to go home as she had wished. However, she rallied and was able to go home on Tuesday, January 25th. The palliative care team were very sad to see her leave as they had become very close to her and would not be close enough to provide her home support. They knew, of course, that Dorothy had always expressed a desire to be at home at the end of her life and they were very pleased that they were able to make the wish come true.


Dorothy had not planned who would take care of her at home when she would be unable to care for herself. Those who knew and loved her just naturally became more and more involved as they were needed. They were supported by St. Elizabeth Visiting Nurses who provided whatever nursing care was required. Many more people offered to help than was practical to accommodate but it showed how many people really cared for Dorothy.


Dorothy knew that she was going home and thoroughly enjoyed being in the place filled with so many happy memories. Her dog Sheena was able to visit several times and a friend hung up a bird feeder outside her bedroom window. For the first few days at home she was able to enjoy the company of people around her. She became progressively weaker but was comfortable throughout that last week at home. She enjoyed music playing throughout the day and night and particularly enjoyed Handel's Water Music, Mozart, "Solitudes" music mixed with nature sounds, and other quiet reflective music.


Dorothy was constantly surrounded by a few close friends. She had asked that they "just be there" with her, and they were. On Monday, January 31st she became increasingly quiet. She had been semi-conscious for the last few days but now her breathing was becoming more peaceful and quiet. There were no rattling sounds, no disquieting movements, and within a short time she died in comfort and peace as the sun was setting outside her window.


Dorothy once wrote that she "expected to get care that will relieve suffering whether that suffering be physical, emotional or spiritual. It is out there for me. It is allowing me the privilege and support I need to make my own decisions about my life until I die and to come to terms with my own death." Her family, friends and palliative care providers fulfilled her expectations with love, skill and understanding.



The following stories are quoted from works done by participants at a workshop on promoting palliative care more actively. This workshop was held at the Canadian Palliative Care Conference in Winnipeg, Manitoba in the Fall of 1993. The writers have given their permission to allow anyone in the field of palliative care to reproduce these stories to promote palliative care. The names of people in some of the stories have been changed to protect their privacy and some writers asked that their own name not be acknowledged, again to protect the privacy of the people presented. You do not need to ask for permission to use this copyrighted material. We do ask that you acknowledge the writer's name of each specific story and acknowledge that you found the story in this book. I am grateful to the writers who allow all of us to share in their success stories.



"Jack"

Judy Galenza


When Jack was diagnosed with pancreatic cancer, he seemed to know his prognosis immediately. He was 43 years old, with two small boys and a wife. He knew their time together was going to be limited. Unlike most others with a terminal illness, Jack did not pursue "wonder cures." He told his doctor he would see him later because he had some living left to do.


The next few months, Jack continued to be an active member of his family. He continued to accept responsibility for his own health and learned to operate intravenous and pain medication infusion pumps. Frequently, you would see Jack inspect and drain his stomach tube and report back to medical personnel on its function. He seemed to feel if he had control of the bulk of his care, he could still assume control in other areas of his life -- those areas being a father to his children and a husband to his wife.


Despite a growing physical weakness, Jack had a determination to be present at his boys' soccer games and to cheer them from the sidelines. Together with his wife's assistance, they managed to infuse his intravenous fluids as quickly and as early in the day as possible so he could continue sharing time with his family. The advancement in pain management also kept him comfortable throughout the day so he was able, and felt like being, an active player in his family.


As the cancer in Jack's body grew, his roles and responsibilities to his family lessened. Jack made a choice early in his diagnosis to stay at home and be cared for with the help of his wife, physician and Home Care. I am pleased to say that Jack's wish was fulfilled and he died peacefully in the comfort of his own home and in the presence of his family. Everyone involved in this story considers Jack a success and he is a reminder to all of us that "dying is not an illness, it is a process."



"Mom"

by Shirley Kloon

Caregiving has traditionally and historically been a role assumed by women. We've had the natural aspirations of nurturing. My story is about my three brothers who provided compassionate and creative care to our mother who was dying.

I, being the only daughter, knew that I would not be able to provide all the care. Two of my brothers were married but when I approached them about caring for our mother, I told them that if they agreed to my proposal/suggestion, they could not pass this task on to their wives.

We developed a schedule so everyone would be able to be with Mom at home at a time that it would be best for each of us. In order to give them a sense of security, I volunteered to be available at all times. Since I was a nurse, I was supposed to be an expert -- the one who would know what to do if they needed help.

I am sorry that I didn't involve my brothers sooner. They were creative, innovative and fun. Our mother enjoyed being cared for by her family at her home. Her own mother, siblings and friends and neighbours were able to come and go at leisure. There were no visiting hours and if she needed to rest we just recessed to the kitchen and living room. When she awoke she would call for us to return or she would listen to the conversation from her room.

One day, one of my brothers set up a temporary bed by the large dining room window and moved Mom to this area to enjoy the sunshine and view of the yard. When the priest came to visit her, he went to the room where Mom had her bed. He was shocked to see it empty and thought she had died. My brother called him to the dining room where he soon realized that she indeed was still alive and alert. This small joke on Father Frank particularly amused our mother and, indeed, raised her spirits.

Their cooking and cleaning generally needed Mom's assistance and advice on how to do this or that around her home in her way. It was very heart warming for her to have her sons care this much about how she preferred things done. She was able to maintain control of her home rather than having some "other woman" coming in and taking over.

I learned that we need to involve the males in our families in caregiving. Given the chance, they can express their love and care in ways that no woman can.



"Mark"

by Alex Heuser

Mark was a man in his early 70s. He was a construction worker. He had lost his wife to cancer a few years ago and he was now dying himself due to cancer. He was being cared for in a hospital palliative care unit and it was during this time that I, as a volunteer, came to know him.

During our first visit, Mark told me quite a lot about his life, including both highlights and disappointments. Most strikingly of all, he told me that he had "one month left."

As well, he was quite interested in that fact that I am a blind person and felt comfortable asking questions regarding how I manage life's tasks. I answered his questions and in so doing attempted to dispel any possible thought that I was super smart or brave. Instead, I shared my belief that each one of us seems to find the courage and strength to do what we have to do. I explained that I visit the unit every Tuesday and Mark asked to see me again the next week.

During our second and third visits, Mark continued to share his life with me including: the onset of his illness; the hope and despair felt with each unsuccessful medical attempt to curb the illness; and his appreciation for the nursing care which has kept him physically comfortable. Of his five children, he talked most about Ron (age 21 -- youngest of the family) with whom he had been living and to whom he had already given all of his limited possessions.

Our third visit was highlighted by Mark's excitement over Ron having become engaged the previous evening and also because Ron had come to visit that same evening and brought his fiancee to meet him. Mark's feeling of joy, even relief, in now knowing that all his children had a partner was abundantly obvious.

During our fourth visit and following a bit of casual talk, Mark asked if I would like some fish. My inner sense told me that maybe Mark was wanting to give me some fish but I couldn't imagine from where unless it was left over from lunch. Not being too fond of fish, I wanted to decline the offer, but somehow I knew to accept.

I had no sooner replied when Mark leaped from his bed, went to the family room/kitchen and returned with a plate of food and a glass of juice for me. The food consisted of some green salad, a slice of buttered bread and a cold but cooked fillet of pickerel. The food was delicious and as I ate Mark told me stories from some of his fishing trips. The meal eaten and my appreciation appropriately expressed, Mark then explained that an out-of-town cousin had brought the home-prepared food to him.

This visit being the fourth one, I recalled with Mark that when we first met he had told me that he had a month left. I told him that I surely hoped to see him next week but, just in case, we could say our "good-bye" now -- which we did. Mark died six days later.

From Mark I learned two very basic things: (1) listen to the inner sense -- it is usually correct; and (2) be aware of how wonderful it must feel to do something for someone else when one has become so dependant on others because of illness. I will always be thankful for the opportunity of having been Mark's last lunch guest.



"The Death of My Father"

by Claire (Burris) Noseworthy

My father, at age 86, was dying from that commonly dreaded disease, cancer. Although he spoke no words, his wish was to be cared for at home. We understood his silent plea because he had completely irrational behaviour every time he entered the hospital, but had a warm satisfied expression of peace when he was back at home.

My father was a General Practitioner who started his medical practice when most of medicine centred around home care. He was lucky enough to be the first doctor liaison in starting up the official home care program in our small community. Our family was lucky to have two nurses amongst the four of us; my mother making three. So it was with the help of home care, a dedicated friend who was a physician, and the mutual support of the remaining family that we were able to keep Father at home and let him die in peace.

For approximately three months, off and on, he required complete bed care. It was a privilege for me to be able to do this for him. My brother, when visiting one day, suggested perhaps Dad would feel more at ease if we let the home care nurse give him his bed bath and his response was, "Oh no, I much prefer my own nurses." It was easy for all of us and I now treasure those moments of touching and caring.

Dying was easy for him. He had a wonderful outlook on both life and death. He once said to me, "Dear, there are only two guarantees in life. You are born and you will die. We don't have a lot of control over either so make the most out of the time in between. God doesn't bring you into this world with a guarantee of 65 years of healthy fun. It's up to you to make the most of each day." So he was ready at 86 to die -- he had no regrets. He stated calmly one day, "I'm ready. I feel I have fulfilled all my reasonable obligations."

Although dying was easy, the process of getting there, however, was not. He once said, "Dying is not formidable, but this pain is unbearable." At first it was a major challenge to convince him to take any medication but quite honestly I think he was grateful to finally let us give him injections at regular intervals. He was a stoic and resisted, vehemently, taking anything himself.

We celebrated when he finally ceased breathing and I swear the undertaker has never recovered from the likes of the "Burris" family!

To live is to die. My father's living and his dying were an inspiration to many.



"Morgan"

by Patricia Collins

I couldn't wait to get the results of my pregnancy test. In my heart, I knew it was positive but I waited patiently for the report before I spread the good news. The pregnancy was quite uneventful except for the feeling of nausea that accompanied each day. My husband and I visited the doctor each month. I watched my diet and tried to live as healthy as possible.

Toward the end of the pregnancy, we took Lamaze classes to prepare us for our due date.

That date arrived and so did a healthy 7 pound 2 ounce boy. We were quite pleased since there were no complications and everything went as it should have. That is until the day before we were to go home. The doctor detected a heart murmur and because the hospital did not have the equipment to do an echocardiogram, we were flown 500 miles to a facility that could do the test. That day is very blurry. I couldn't understand how this could be happening but even though I was scared, I was hopeful.

Very shortly after our arrival, the test was done and I was told that this healthy-looking baby boy was not going to live. I remember very little after that. I was numb. I guess I was in shock. He was placed in the neonatal unit and we were given a small room on the same floor. We didn't know what to do. We had so many questions that no one could answer. Why? How long? How was it going to be at the end? Can we take him home? He had a hypoplastic left heart which meant that vital parts of his heart were not developed and eventually his heart would stop working.

The medical and nursing staff were kind and compassionate but did not understand what we were going through. It was left up to us. It was very difficult but we decided to go home if the hospital there would re-admit Morgan. This was arranged and also I was going to be able to stay on a medical ward in the hospital that was closed so I could be near to breast feed. When we arrived at the hospital, Morgan was readmitted but no arrangements had been made for me. We ended up staying at a motel nearby to be awakened when Morgan awoke to be breast fed.

We were exhausted, confused and most of all, we were angry. We were going through this terrible experience and it seemed that we had to work harder to make decisions because of the lack of support.

I think it was partly the anger we felt that helped us make the decision to take Morgan home. Even though that decision was made out of anger and confusion, it was the best decision we ever made. We took him home and everything changed. We were able to take care of him and establish a routine for the three of us -- we were a real family. Friends and neighbours and, in particular, family were able to come and meet Morgan and visit. Morgan lived for nine days and died a peaceful death in the arms of his Mom and Dad.



"Never Lose Your Smile"

by Kim Kerr

Ann was a very special person. She is someone who walked into my life, touched it and kept leaving a huge gift behind.

Ann was diagnosed with a re-occurrence of cancer. She was told her condition was terminal and that, unlike the last time, there was nothing they could do to stop the cancer cells. Ann was angry. She felt betrayed by the medical system who only a few years earlier told her she had a clean bill of health. Ann shared this anger towards all who cared for her and her family.

Ann's family was persistent that they could, and would, care for her at home. They wanted to give back all they had shared and be a part of her death. Ann wanted no part of this for her family. She packed her small tweed suitcase and told all involved she was going to the hospital to stay and die. Her family became very frustrated but agreed with her wishes. They visited frequently but they were angry and discouraged.

Ann was diagnosed by her caregivers as having "Ringitis." She rang her call bell frequently and demanded to have her needs met. Staff became very discouraged and nurses were shocked. All available resources were utilized. Debriefing sessions were held regularly with staff. Brainstorming was done with regards to providing the best care possible. Palliative care conferences between physicians, social worker, clergy and staff were held regularly but all involvement in care was discouraged and "sent away" by Ann.

Nothing seemed to improve. Ann became more demanding and bitter towards us and nothing seemed to be resolvable with her family.

The part I played in Ann's care was as a staff nurse. I had become frustrated with her care. I tried on numerous occasions to "open the door" for communication and time and time again was unsuccessful.

One evening as we heard the buzzer ring for the twentieth time, I said to a co-worker, "It's okay. It's my turn to walk on pins and needles." I took a deep breath and put a smile on my face. I walked into her room. She yelled at me to do some menial tasks and said, "And, take that fake smile off your face". Under my breath I laughed and to my amazement, she laughed too. I turned around quickly to make sure it was a laugh and not a hiccup and to my amazement she was laughing. We both laughed together.

She said to me, "Of all the nurses, I can tell that you have a lot of people who love you". I put down her side rail and sat with her (I took her hand) and we talked. We talked about her anger, her feelings at losing control and how she felt her family let her down by not understanding and by doing what they thought was right versus what she thought was right.

We closed our conversation with her saying, "I have decided to let you care for me. Remember all those that love you and show them love. Whatever you do, do not lose your smile."

Ann's journey towards death had taught me so much. Her constant struggle for control in a setting where so much was taken away was so evident. Once Ann decided to let us help her die and once we realized that she was the leader, our care was well received. Her memory will be with me always. Her death was peaceful, surrounded by family and friends.

 



"Mr. C."

by John Mowry

Upon returning from vacation this past May I learned of a 40-year-old man who had been referred to our program. Mr. C. lived with his wife and three daughters in a small agricultural community; the prime reference point in town was the flashing amber light on the main street.

I first met the family in their home in my role as a social worker who sees patients both in their homes and in the hospital. The home was modest but comfortable. I quickly learned that what was important to the family was their relationship to one another and their attachment to their land and their horses. The home was surrounded by mountains of sage, wild flowers and riding trails.

I asked what was different for the children since their father had become sick. The oldest (10 years old) told me of how she couldn't go horseback riding with her father anymore. The middle daughter (7 years old) spoke about her father who took care of her when her mom was sick and wondered who would care for them if she became sick again since her dad was too sick to help. The youngest daughter (2 1/2) sat on her father's lap. All the children lamented that they had extra chores to do!

As the weeks passed, Mr. C. became increasingly ill. The children wanted factual information about their father's cancer. What colour, size and shape was it? What operation did he have? I was able to share specific information obtained from the hospital's pathologist.

On one of my visits I commented on the horse pendant that the oldest daughter was wearing. She told me it was given to her from a classmate at school. She had written a story describing what it was like for her, watching and caring for her father who was dying of cancer. She said one of the boys started to cry as she read her story. A few days later he gave her the necklace she was wearing in hopes of making her feel better.

Mr. C. died at home, quietly, in his own bed. His two oldest daughters had been sitting with him, on the bed, just hours before he died. Extended family were present and I had been there earlier in the day.

Mr. C.'s brother had built a coffin. Mrs. C. phoned me to say her husband had died through the night. The girls were picking sage and wild flowers to put into the coffin which was in the family's front room. By the afternoon, the coffin was removed from the home and taken to the crematorium.

Follow-up meetings with the family leave me with an optimism and faith that relationships are enduring, if ever changing. They are working hard to discover and define their "new family." The two oldest girls continue to write about what they have experienced and are experiencing. Their mother is searching for her identity as a single parent. It will be through their searching, writing and sharing with others that they will make this family true ambassadors of Palliative Care.



"Helen"

Anonymous

Helen was a 64-year-old "bag" lady. The doctor and I walked her from an emergency shelter to our small six-bed hospice three blocks away. Helen's pain from cancer of the urethra was severe. Her world was one of paranoid schizophrenia and the streets. Her anguish was that the "inhumans" were burning her insides. Her pain distraction, for it can hardly be called management, was to create a topical pain consisting of brushing her perineum with no less than a hair brush.

For three days she sat curled, still in outdoor clothes, in a chair with her leg bent under her while she talked of the cruel inhumans that had taken her over. She refused to even look at any pills being offered that would help get rid of her inhumans.

On day three the break came, to our astonishment. Helen made no fuss or refusal when liquid medications were offered. Another 24 hours brought pain relief and, within a week after, anti-psychotics had also been added to her regime. We had the most beautiful, friendly lady as part of our family.

Now Helen was still a little confused as to the number of children she had. "I know I had two," she said, "but you never know what happens at night so perhaps I have four." Helen's sister, who we had managed to track down, would have nothing to do with her and certainly was not about to give us any information. So for many weeks we kept asking Helen questions that might give us some more concrete information about her children.

Another break came. Her sister actually called us and became more cooperative. During the next week we managed to track down one of Helen's children, her daughter, living in Saskatchewan. conversations were stilted at first. Donna had been searching for her mother for almost 15 years and was quite overwhelmed to find her but also overwhelmed that she was terminally ill with so little time to live.

Donna had a husband and children and she wanted desperately to see her mother. The family was living on welfare and could not afford the trip. A few weeks before, our hospice had received a donation from a grateful family. We decided that no better use could be made of the money than to pay for Donna and her family to drive out and spend a few days with us in our province.

The reunion was dramatically simple and beautiful and during the three days they were together a bond was reborn and many pictures were taken. Helen died three weeks later, sadly, very shortly before her 65th birthday. Her pension cheque, she told us, was going to make her a rich woman and she was going to share it with us and Donna.

Two years later we still hear from Donna. Her letters are full of love, and now understanding of why her mother had abandoned her all those years ago when she was thirteen. How much more fulfilled could we be too!



"Mary"

by Patricia Bray

Coping with short-term cancer can sometimes be catastrophic from the view of the few days you have to prepare the client and the family. Coping with long-term cancer (4-5 years) can be just as catastrophic since the client has prepared for death, it did not come, and now what do you do?

Mary had cancer and was on oral chemotherapy for a few years. During this time she did a lot of repairs and renovations to her home to have everything ready for her family when she died.

Mary developed a new tumour site in the lung and had it surgically removed and returned home. She felt she had battled cancer several times and this was just one more crisis. By this time, her family was completely exhausted. The family physician had not referred Mary to the palliative care program because she had come through so many crises before. He felt she would probably make it through this one too.

The daughter had given up work to look after her mother. She called me when she was at the "breaking point." After an hour's discussion on how the program could benefit her and her mother she decided to ask the doctor to refer her mother.

Mary was a very private person so we entered her life and her home very slowly and gently. When all the support systems were in place, a family conference was held and open discussion showed other members of the family how they could help the mother and daughter.

Mary remained at home, had several major crises in her last month of living, and the necessary services came to her home to help her. Her only real fear was going to the hospital. The daughter was very competent and functioned much better now that she had help.

Mary died peacefully at home with her family around her.

A few days after her death, the daughter was asked by the physician what she thought of palliative care. She replied that she couldn't understand why she had not been referred to the program long ago. Maybe she wouldn't have had to quit her job. Maybe she could have had more patience with her mother had she not been so worn down from coping with the situation for such a long time by herself.

In the grief recovery period, the daughter felt very much at peace that her mother had her wish to remain at home throughout her illness and death.



"Christmas in September"

Anonymous

Sarah lived (perhaps still lives) on the banks of the winding river with a Micmac name which means "Abundance" or "Paradise" depending on whom one asks. She was 78 and she was dying. She had raised nine children, all of whom cherished their mother; none of whom wanted her to know she was dying. All caregivers were warned not to tell her. A family member always sat outside the bedroom door in case one of us thought we would tell Sarah of her illness.

One day Sarah asked to see the Hospice Coordinator ALONE. She ordered everyone outside her room and outside of the house.

"Am I dying?"

"What do you think?"

"I think I am."

"Do you want to discuss what you think with your doctor or your family?"

"Answer me honestly. Will I live until Christmas, in your opinion?"

"No."

"Thank you very much! I love Christmas and I must hurry to celebrate it one more time.

They (my family) need never know you've told me."

Following our conversation, Sarah set about preparing for Christmas. She wrapped, with volunteer help, collections of spoons, thimbles, salt and pepper shakers, coins, and various other precious, personal items in bright yuletide paper. Appropriate name tags were added; a Christmas tree was cut and decorated; a marvellous holiday dinner was prepared and everyone was invited.

One daughter on the other side of Canada sent a tape of Christmas greetings to which the other children added their memories of Christmases past. The tape was placed under the tree for their mother.

Sarah celebrated Christmas on September 2nd with food, songs and gifts among those she loved most. Sarah died peacefully and with gentle acceptance on September 4, knowing she had given another Christmas full of memories to her family and had been able to divide her personal belongings among them as she wished -- a living will.

She had often remarked that although she and her husband had had the opportunity to travel extensively, she had always been happy to return home and sit in her sun porch overlooking the River of Abundance. She would say, "I am content to live and die in this beautiful land which truly is Paradise to me."



"Andre"

Anonymous

Andre was 30 years old the day he noticed his colour was a bit off. I was 30 years old the day, two weeks later, I told him his diagnosis. The ensuing nine months were filled with struggle and pain and yet, looking back, his was a triumphant death.

Adversity had marked much of Andre's life -- family troubles, a slightly "wild" youth, and a long struggle with infertility. Finally, at age 30, he had reached a plateau with a valued vocation, loving spouse and adopted family. But now he was ill, off work, and listless. One by one the treatments failed: surgery, then chemotherapy, then the gamut of "alternative therapies". So how would this tragedy be turned to triumph?

Andre's triumph was spiritual. In an age of disbelief he found belief. In a time of hopelessness, he created hope. For his was not the soft spirituality of passivity but rather the solid practical spirituality of facing mortality directly.

From his faith in Christ, Andre was able to summon the resources to deal with his illness and all its ramifications. He communicated his needs to his caregivers without ambiguity. He comforted his diverse family and was able to receive comfort. He lived each day fully and with such determination that even acquaintances were inspired.

To my surprise, I found myself changing through Andre's illness. We became friends, and I began to see myself as his pupil as well. He confirmed that the strategies of palliative care that I had learned, worked well. He affirmed the team approach and gently reminded me of my limitations and needs.

Andre became increasingly ill, and then he died. Some would say that his death is what matters. I would simply reply that Andre lived, and lives on. It is how he lived and how he died that really matters.



"Maxine"

by Kelly Peloquin

At one time I may have viewed this as a non-success story. It was a situation where my need was greater than the patient and her family's needs. In reality, it was a great success and I believe that Maxine's living process until she died was what the family needed as well. There is always room for improvement in any situation and I feel we will learn from the experience.

I initially became involved with Maxine through her course of chemotherapy, in an outreach setting. This was in preparation for her impending bone marrow transplant. She and I went through a lot together. Maxine came through the ordeal fairly well, in my opinion. She felt strongly this was something she had to do despite all the hardships she endured.

To Maxine and her family's horror, the cancer spread to the brain not more than eight months following the bone marrow transplant. This was followed by a course of palliative radiotherapy to help minimize the cancer spreading but this produced only a short period of symptom relief. When she became weaker, and her needs became more than she could handle alone, her strong network of family and friends stepped in and provided a level of home care, meals and tending to the yard that met Maxine's approval. When she was close to death, it was her decision to move to the hospital where she would spend her remaining days.

It was her wish not to die at home where she might ruin it for the rest of the family. There were conflicts between her and her husband that she felt she didn't want to work on even though it would be the last chance. Despite my constant encouragement to resolve these issues it was not her choice. Her family and her friends were there for her to the end. I feel all her wishes were granted even though they were not the same as mine. She said to me, "Not everything turns out perfectly with every family and that is something you have got to understand!"



"Joe"

Anonymous

This is a story of Betty who provided home support to Joe. She became his friend and she reached out to care beyond the responsibilities of her job.

Joe was a 78-year-old bachelor living in a rural Alberta community. He had lived alone all his adult years and had a history of alcoholism. He was diagnosed with terminal cancer of the stomach and began to receive Home Care services. He was a crusty old individual who claimed no one cared about him. Betty was the Home Support worker assigned to provide housekeeping services to Joe. She was very apprehensive, at first, of Joe due to his reputation in the community. However, she began to provide the services and became the most frequent company that Joe had.

As the relationship progressed, Joe indicated a desire to see his sisters once more before he died. He always stated that he had lost touch with them and after all these years they probably wouldn't want to see him anymore. His last contact with family had occurred about forty years ago. While wanting to talk to, and to see his sisters, he was just too frightened of rejection to even start the search.

Betty could see that Joe's health was failing rapidly. Unbeknownst to Joe, she became a "private detective." Joe only knew the province where his sisters had lived and that one had become a nun in the Catholic Church. Betty worked with contacts in the church to obtain possible locations of Joe's sisters. As his condition worsened, Betty started phoning. Miraculously, Betty was able to contact one of the sisters, who knew the location of the other sister as well. When Betty explained about Joe's condition and his whereabouts, they immediately made plans to come to see Joe.

When Betty informed Joe of her actions, he couldn't believe that one human being would care enough about him to do this for him. Joe's sisters were able to visit with him for several days before he died. As he told Betty on the morning of his death, he could die "at peace" because of her actions.




"Nora"

by Sandra Davies

When I met Nora in 1984 she was living with metastatic ovarian cancer, a mastectomy, a colostomy and monthly debilitating sessions of chemotherapy which left her nauseated and weak for up to four days. She was 64 and had been widowed for five years. Her late, and much beloved, husband had been a member of the lay clergy of the Anglican Church. Her two adopted daughters, survivors of abuse in their early pre-Nora childhood, were grown and married. One lived hundreds of miles away and the other lived in our home town with an alcohol-dependent husband and adolescent children who were in and out of trouble with the authorities. Nora had been an Early Childhood Education graduate and supervisor of a local day care. She was superbly competent in her job and was well loved by staff and by the children for whom she cared.

My job at the time was to "provide palliative care" within: a limited budget, a task-oriented community, and an efficiency-driven, fee-for-visit contracted nursing service. Palliative care was undefined.

Nora taught me most of what I know about palliative care nursing, a course of which I now teach. She was slow to trust and hesitant to share. Some of my colleagues were critical of her needs: "Someone to sit in my bathroom with me twice a week while I soak my damaged body, my raw colostomy, my scarred non-breast; someone to call in the night; someone to promise to keep me clean if I become comatose; someone to tell me when I'm starting to die." None of these were the physical tasks from which my colleagues took comfort. Palliative care was relatively new in our community and its demands were not well understood.

I sat and listened and wept and struggled as Nora carried on, patiently accepting my help and giving me her support. Homemakers were interviewed and dismissed until Dixie arrived and performed loving miracles with tidbits of food, expert plumping of pillows and a shining clean room. More help was needed and the money was running out. Her daughter moved in. "It's time for me to give something back", she said. She learned colostomy care, morphine injection administration, and anti-nausea techniques. I visited twice a day, then three times, and then four. Her doctor was enlisted, sat on her bed, spoke of her dying and of spirituality. The priest came and her grandsons learned to lift her up in bed. The new team of caregivers grew and learned.

Finally, Nora decided to stop her chemotherapy. "I'm ready now, Sandra. Please keep me clean and out of pain. I want a party to say goodbye but we'll pretend it's a birthday party for my granddaughter." Her eyes twinkled. The party was scheduled. Nora got weaker and we moved the party ahead. One day she took my hand, looked me in the eye and dared me to break contact. "I'm dying now, aren't I?" She was so calm! "It would seem so, Nora," I answered and we smiled together. Smiled!

On the day of the party, she asked me to get her dressed in her best outfit. "Only on the top, that's all of me they're going to see." She put on dangling earrings. "Do they make me look like an old scrawny witch? -- Then take them off." Her best sheets, flowers and "Kentucky Fried Chicken -- my granddaughter's favourite." Then, a satisfied, loving grin -- "It's just the way I pictured it!"

The party was bitter sweet and a great success for Nora and her family. And for me.

Six days later, Nora died in the company of her loved ones. She was clean and pain free to the end.

 

"A Success Story: Patient and Volunteers"

by Anne Goertzen

I got the referral from a doctor. The patient had lung cancer and was in the hospital. He used to be a 300-pound man and now was all skin and bones.

I walked to his room to do the assessment. He greeted me very friendly because he had been informed by the doctor that we at the hospital had a palliative care program which he could benefit from. He was very cooperative with the assessment even though he did have shortness of breath at times. He told me about his illness. He also told me about looking for help from different doctors during his illness. We had a nice visit.

I asked him whether he would mind a lady volunteer. He said that was no problem. While doing the assessment I found out that he really liked music. I had a volunteer who plays the harp. I matched him with her and it was a perfect match.

After a while this patient went home. Even though he lived 23 miles out of town this volunteer would visit him quite frequently. The home setting for him was bright. He had a bed in the living room with the window facing the street. People walked in and out. He also was rushed to the hospital quite frequently. The volunteer kept on making her regular visits.

He was admitted to hospital two weeks before his death. A very sick man by then, he needed 24-hour palliative care and he preferred to be in hospital.. This was arranged by the Coordinator together with the family. Nights were very rough on him. At first, he refused volunteers at night. After two very restless nights he agreed he would give it a try. The volunteer sat with him all night and left at 7:00 in the morning. At 8:00 a.m. the coordinator came into his room and he looked so relaxed and with a big smile said, "I did not think it would make such a difference." For seven nights we sat with him.

The last night a good friend of his called. He wanted to stay with him. I told his friend that I would go and ask him. When I came to his bedside, I told him his best friend had called and wanted to stay with him. He refused him. He did not want him to come. He wanted a palliative care volunteer. I called his friend back and he said, "You hurt my feelings."

What could I as a coordinator do but accept the patient's wishes?

He died early that morning with the volunteer beside him. His wife and part of the family arrived in time before he died. The family was so grateful for the palliative care volunteers.

Some of us attended the funeral which was much appreciated by the family. The bereavement follow-up carried on for five months. After five months, the wife and the two children living with her in their home were ready for a trip to B.C. We closed the case. The wife and one daughter are now regular attenders in a cancer support group.



"Husband, Father, Friend, Farmer"

by Thelma Alexander

My story is about a 53-year-old farmer, with four beautiful daughters, who faced terminal illness by including his family and friends into his personal space.

When he travelled to the city hospital for a lengthy operation no one knew he would not undergo this operation. Instead, after a short exploratory surgery, he was back in his hospital room. The physician explained to his wife that there was nothing that could be done to alleviate the farmer's distress as the cancer had spread. The wife had to explain this to her husband and then to her daughters; two of whom were married and two of whom were college students. No wheelchair was provided when he walked out of his room carrying his personal possessions in the black garbage bag provided.

He returned to his farm, starting proceedings to auction off the machinery and put his affairs in order. He was an excellent craftsman and whenever he noticed that renovations were needed he worked until his strength was exhausted and he could no longer lift the tools required to complete the job.

He made time to speak to each of his daughters, assuring them of his love and telling them of his hopes and dreams for them. The daughters responded by preparing palatable foods, by singing and playing piano selections for him, by massaging his feet, and bringing him cushions to elevate him to more comfortable positions. They took the time to listen and to be with him at every possible moment.

While he was still able, he visited all his friends and when he became unable to travel, he responded to the home care nurses with a courtesy that endeared him to all. His wife cooked food that he could digest and guarded him from over zealous relatives or friends who came to visit during his last days.

He wanted so badly to stay at home and a bed in the sitting room was made for him where he remained until one day before his death. Then the trauma of choking spells increased and finally his wife called for the ambulance. When he entered the hospital she informed the doctor that he was worried he would not get the same treatment that he had received at home. The doctor assured him that they would not change his routine and the family could assist in the hospital as they had done at home.

As a friend, I could only stand in the background and help when I saw a need. What was it that caused me to waken early, bake muffins and venture the eight miles at sun rise to be with a dear friend? When I arrived, preparations were being made to transfer him to the hospital. Just being there as a friend to assist whenever possible was a gift. I whispered in his ear, "We (my family) will help your family in any way we can." We believe that if one truly cares for the deceased, then one will be there for his or her loved ones.

The success in this story is the patient's willingness to accept help, but also to give of his wisdom to friends and family so that even to this day, seven years later, his spirit lives with us.



"Mr. Prumble"

by Dianne A. Hyland

I had only graduated from nursing school less than a year ago when I met Mr. Prumble. He was my mentor from the day we met. He was diagnosed as having early stages of prostrate cancer.

It wasn't long before we realized that his cancer had metastasised and his health was failing. Mr. Prumble, I thought, was a difficult patient. When I came in to give him his bed bath, he would refuse and indicate he wanted it later. He refused to eat when we tried to feed him. He would take off his sanitary products and throw them in the corner.

One day, very frustrated, I asked him, "What do you want?" "I want to die with dignity".

This made me stop and realize that he was a human being who could still make his own decisions.

I found out that the reason why he refused his bath was because he was in pain. When I scheduled his bath after the pain medication was administered, it was more comfortable for him.

I began asking him what he wanted to eat for meals. He gave me requests and I even made home-made chicken noodle soup for him. I also respected his wishes when he only wanted sips of water.

By changing his sanitary products more often, I kept him dry and odour free which had really bothered him before.

On my last day of work before going off for a week to get married, I told Mr. Prumble that I would be away. He told me that he would still be here when I got back because he was going to die on my shift. He told me that I should always listen to my patients and go with what is in your heart instead of following the textbook.

I was very angry when I went home. I didn't want anyone to die on my shift. I felt he was getting even with me for all our past confrontations. My fiance said to look at the situation more optimistically.

When I returned to work I learned at report that Mr. Prumble was failing quickly and he hadn't been expected to make it through the night. I quickly went to his room and noticed a drastic change from the week before. I went to his bed and held his hand. I told him I was there with him. His eyes fluttered and he looked at me and said, "Don't be afraid to let your patients die. Just be there for them and respect their wishes." I had tears in my eyes when he told me that someday I would understand. I gave him a kiss and held his hand until he died about an hour later.

Now that I am involved in palliative care I can honestly say that Mr. Prumble had an insight into how I could make a difference in nursing. Thank you, Mr. Prumble.



"Kasey's Success Story"

by Shari Douglas

My hairdresser's father was diagnosed with cancer of the liver. During my appointment she proceeded to tell me about this and how he was coping really well with the news. They had lots of hope and they were gong to fight this -- a story we have all heard many times.

My job is to develop palliative care policy and programming within my organization and to teach palliative care philosophy to caregivers.

As I began to talk with her about the issues surrounding her father's new diagnosis and how to talk to people with cancer, it became clear that this was not what she wanted or needed from me. My own personal feeling about the situation was one of frustration. My thoughts were, "But I know what is ahead for you and I can help you get through this. I don't want to see you slip through the cracks of our system and suffer unnecessarily." I withdrew and waited but offered to be available at anytime and for any reason.

We had talked briefly in the past about my job and what I do but she clearly didn't understand it and I had received the usual reaction, "You do what?" accompanied by a look of horror.

Over the next few appointments I got a play-by-play description of her father's declining health but he seemed to be doing okay. The family doctor was knowledgeable in pain and symptom control and her father was comfortable. He and the family had worked through many of the issues facing them and had decided that they did not wish hospitalization. He wanted to remain at home to die.

This time I mentioned Home Care and the services available to them. The response was, "Oh no. We can manage. We don't need that." As time passed they did accept a referral and were assessed by the case manager and provided with the supports of their choice and the necessary equipment.

The father was never admitted to hospital at any time during his illness and was treated conservatively as he wished. I might add he had also chosen not to accept any treatment of his illness after being given the information and the options available to him.

After his death, on my next scheduled appointment, Kasey reviewed her experience. She was almost elated and couldn't say enough about their positive experience. She had taken several weeks off work before his death to be with him and to assist her mother in caring for him.

Some of the incidents she recalled were the days when she bathed him and assisted him to use the urinal; the times when she just sat and talked with him for hours. Also the comfortable silent times they shared. She spoke of the time when he was incontinent of stool several times and every time his wife bathed and cleaned him he said, "Honey. You don't have to do this. I'll only mess again in another ten minutes." Her mother replied, "If I'm here and I can do this for you, I want to."

Her father had a habit of winking at his "girls" as he called them. In the final days, he was unable to verbally communicate with them but would still wink when they came into the room. On the day he died, he was semi-comatose due to his liver cancer (not from any of his medications). Kasey and her mother slipped into the room and spoke to him telling him his girls were there. He winked and died peacefully not long after.

Kasey's story of how wonderful this whole experience had been, and how well she and her mother were able to cope following his death, reaffirms my commitment to palliative care and renews my energy to promote and educate so that palliative care is available to all.



If you, or someone you know, has a palliative care success story, please send it to Harry van Bommel, Legacies, 11 Miniot Circle, Scarborough, Ontario, M1K 2K1 or e-mail to info@legacies.ca

We cannot promise that it will be published in a future edition of this or another book but it will add to the overall data on how successful palliative care can be. There are three main perspectives we are looking for in success stories -- the perspectives of people who are dying, their family members and their caregivers.

The Heart of Hospice


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Copyright © 1994 Harry van Bommel

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