The Difference Between Pain and Suffering

Colin Hartree

Albert was 75 years old when admitted to the hospice with mesothelioma and intractable chest wall pain. He was a retired hospital porter who had seen enough in his work to know that there was a prospect of a painful, difficult death.


On admission, he was cachectic, withdrawn, bitter and angry. He was difficult to engage in conversation and would answer questions as minimally as possible. He described no surviving family and no friends came to visit him.


It was my task as a junior doctor to attend to him daily and I usually put off seeing him as long as possible, so difficult and uncomfortable was it to engage with him and make any meaningful connection.


For his pain we tried increasing doses of opioids, alternative opioids, a variety of adjuvant analgesics including antidepressants but none of these pharmacological changes made any difference.


Cordotomy was not available locally but the pain clinic specialist visited and offered to insert a pleural catheter, something he could only do in three day's time.


I gradually learned that although he would talk about anything other than his illness, most of all, he preferred silent companionship. It was far from clear to me at the time that this had any therapeutic benefit.


Two days before the procedure, a distraught nurse called me to the bathroom where Albert was crying inconsolably. By now I knew better than to attempt any words and merely drew up a chair and sat beside him. Gradually the sobbing calmed and haltingly he began to talk. He explained that he knew he was dying and this in itself was not the cause of his distress. He went on to describe that thirty-five years ago he had had a big row with his son and they had not been in touch since. He was now fearful that he would die without ever seeing him again.


Fortunately, it was possible to contact his son who duly came to visit the next day. Following the visit, Albert was transformed. He complained of pain no more. It was possible to reduce his analgesic doses markedly and we cancelled the pleural catheter. He died peacefully six days after his son's visit.


I learned from Albert to distinguish pain and suffering, to realize that if medicines aren't working, it may be a pointer to a different sort of distress that needs a different sort of approach. It seemed that the time spent in silent companionship had enabled sufficient trust to develop that enabled him to identify and share the source of his suffering. The re-connection with his son meant that Albert had died healed.


© Hartee, Colin. (September 2006). "The Difference Between Pain and Suffering" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Dr Colin J. Hartree MB BChir MRCGP FRCP
Consultant in Palliative Medicine
St Wilfrid's Hospice, Grosvenor Road, Chichester, West Sussex, UK PO19 8FP
colin@hartree.org.uk


AFGOS

Joyce Holland

When I was in my 50s I attended a new age church where a Nun addressed us. She started with the words "Life is full of AFGOS."

As we pondered on these words she continued "Another Fucking Growth Opportunity."


The phraseology was shocking ­ but the impact significant.


I began to review my life and realize that I have been "fortunate" to have encountered many AFGOS.


One of the first was when my precious daughter was born. After thinking that I might be sterile after a perforated appendicitis, I gave birth to a perfect baby girl, Jane, after 36 hours hard labor. Over the next 24 hours it was discovered that she had congenital dislocation of her hip and she was placed in a frog plaster for the first 6 weeks of her life. This was my first great lesson in acceptance of life's imperfections. Instead of showing off my perfect daughter to everyone, I had to carry her on my hip and cover her lower half with blankets to conceal the cast.


Life has continued to throw AFGOS to me until my age of 74 and I can honestly say that I appreciate the lessons that they have taught me and believe that they have helped me to be a better and more understanding Palliative Care Physician.


© Holland, Joyce. (September 2006). "AFGOS" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Joyce Holland, MD, Palliative Care Physician
South Fraser Health Authority and Delta Hospice
4407 River Road W., Delta, B.C V4K1R9 CANADA
joyce@jaisbote.f9.co.uk


What It Means to 'Be There'

Andrea Holtzer

In the spring of 2004, my brother-in-law, David, was dying of cancer. He and my sister married three years earlier. This was David's second marriage. They were the proud parents of a beautiful little girl and life held much promise. To say David did not want to die is an understatement.


I was changing jobs and had one week off. There was a long list of things I was hoping to accomplish with this 'free time,' but instead I was called to help with David's care, 200 miles away. At this point I was an RN for 24 years. I was OK with being around and helping dying people. I was ready to talk to David about dying ­ loss, love laughter ­ but he was NOT. What he focused on was cure, even though the doctors said this was not possible. There was no laughter, no tears, no heartfelt conversations. Just minute to minute, hour to hour tweaking of medicines, emptying of the catheter bag, managing the I.V.


I was a skilled nurse! I was present when my grandmother died and when my father died. Surely I could help! No way! He wouldn't let me or anyone else in.


I literally went to the library and found books by Dr. Kubler-Ross. She wrote about patients who never found acceptance or found it just hours before death. WOW! I could now deal with this ­ it was no longer my job to help David accept his terminal illness. This was an enormous relief.


The next problem was a practical one. Although I tried to teach my sister the mechanics of his care, she was unable to learn. She is an artist, not a "scientist." I was starting a new job ­ but do I abandon my own sister and brother-in-law in their hour of need?


Well, I reached out to my dearest friend, colleague and mentor ­ Win!! She had been a nurse about 40 years and is one of the kindest, wisest persons I know. She helped to put things in perspective. No amount of time was going to change my sister's paralysis. She was dealing with the impending death of her husband ­ the father of their 35-month old daughter. The sadness permeated every aspect of life, despite our best efforts to provide some sense of normalcy for my niece. We needed a "Plan B."


Win helped me understand that we needed to consider a skilled nursing facility. She urged me to find a place close enough for frequent visits. The burden of caregiving would become the responsibility of the staff and my sister's job would be wife, mother, love, and friend. Another "WOW" moment! We didn't have to do this ourselves. Did my 12 years of experience in home care blind me to other options?

This conversation with my sister went better than I could have imagined. You could see the relief on her face. We had Plan B and it looked OK.


David died in that facility about three weeks later with his family surrounding him. I'm not sure that he ever did accept his terminal illness but this was no longer important. David died in his own way, scripting his own agenda. Did I want more for him? For my sister? You bet. But it wasn't meant to be. And things were still OK.


I've 'been there' for many patients and their families since David's death. I've come to believe that I learn more from the patients and families that challenge my idea of a good death. "Whose death is it anyway" takes on new meaning for me. Believing that options are available and not being afraid to explore them is critical. Thank you, David, for teaching me so much.


© Holtzer, Andrea. (September 2006). "What It Means to 'Be There'" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Holtzer, Andrea, BSN, RNC
St. Mary's Hospital, Palliative Care Program
17 Minaville Street, Amsterdam, NY, 12010 USA
andreaholtzer@paxway.com


Hospice-Palliative Care IS the Weaned Child on the Lap

Elizabeth LaRocque

Note to reader ­ On September 13, 2006 at a community college, Dawson College in Montreal Canada, a lone gunman (Kimveer Gill) went into the school and killed at least one student (Anastasia De Sousa) and seriously wounded at 9 others. The following story is based on these events.]


Recently in church the homilist said he had taught the policeman who held the body of Anastasia [De Sousa] in his arms. This brought to mind the powerful image of Michelangelo's Pieta statue, the image of a mother holding her dead son on her lap. Apparently the sculptor, in order to depict a full grown human person on another's lap.had to depict Mary like a 250-pound football player: huge.

It does take a Huge-Spirited person to run full of fear, yet fearlessly, into dangerous places where death may come at any second. It sounds like many of those police persons and many students and teachers had this Huge Spirit of supporting and sustaining the lives [and possible deaths] of many at Dawson College recently.


It reminds me of the Davidic Psalm/Song Prayer #131:4 Like a weaned child on its mother's lap, so is my soul.


A cousin of mine teaches at Dawson. She and many others manifested this Huge Spirit as she held close to her the lives of several mentally challenged students, forgetting any danger to herself, until they were able to manage on their own. Like weaned children on a lap.


I reach out my hand and place it on the shoulder of that policeman, of my cousin, of the mothers, fathers, siblings, relatives, friends of Anastasia and Kimveer and all the loving caregivers who hold the dying and dead in the lap of their compassion, love and grief. I invite all to stretch out our hands with palms down as a gesture of blessing, of solidarity, of compassion, as we unite with our Jewish sisters and brothers in these holy days of atonement, prayer, and restoration of the Huge Inclusive Spirit of being one on the planet.

A few weeks ago the Montreal and Quebec community, among many others, held the Dawson College community on its Huge Lap.

This past week at Montreal's Palais du Congres Conference on Care of the Terminally Ill, 1,500 participants from 38 countries reached out and touched the shoulders of one another as thousands of stories of death, dying, and grief were shared. How many weaned persons per year does the worldwide Hospice Palliative Care community hold on its planetary lap? The numbers grow.

May we all have this Huge Spirit of Mother Earth with weaned children on her lap. May we all have this Huge Spirit of Pieta, of Compassion, of Acceptance.


May all beings be one.


© LaRocque, Elizabeth. (September 2006). "Hospice-Palliative Care IS The Weaned Child on the Lap" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Elizabeth LaRocque
End-of-Life Spiritual Care Planner
8343A Blvd LaSalle, LaSalle, QC H8T 1Y6 CANADA
514.365.8275,
monkbags4aids@hotmail.com


Joanna's Story

Suzanne Leece

In 1992 I attended the International Congress on the Care of the Terminally Ill for the first time. I had been interested in palliative care for about 8 years and had been looking for opportunities to learn more. This conference was a life-altering experience for me. I have only missed on of these conferences in the years since 1992.


This "success story" occurred just a few months after returning from this very important event. Joanna was in her late 50s. She was a single mother of 9 children, ranging in age from their late teens to early 30s. Joanna had advanced metastatic breast cancer. She weighed about 80 pounds. Her body was showing all the signs of preparing to die. She had not been able to eat for about 2 weeks, had very little urine output, her respirations were irregular, her hands and feet discoloured and cool to touch. She was not able to talk. Yet Joanna could not seem to let go and seemed to be fighting her death.


After observing Joanna and her children for a couple of days, I began to see a pattern. As her children surrounded her bed, there were times when one or two of them would be visibly and audibly upset. As one of her children would sniffle or sob, Joanna's facial expression would change and she would take a deep breath. I began to wonder if what was happening was that Joanna was hanging on because her children were not ready to let her go.


This concept was new to me, having been introduced to it at the conference. I now understood that persons die on two levels: that of the physical and that of the psychosocial and spiritual. Joanna's body was shutting down, but she did not seem ready to leave her body. I had learned that often persons need permission to die and a way of saying goodbye. Was that what was happening here?


I continued to watch this family and began to observe that Joanna's oldest son, Henry, was beginning to show some leadership of his brothers and sisters. I took Henry aside and spoke with him for a few minutes about my observations and the possibility that his mother may need to know that he and his siblings were going to be OK ­ that they understood what was happening and introduced the thought that she may need them to say goodbye and give her permission to die.


Henry, as the oldest male in the family, turned out to be a "take charge" kind of guy. He immediately gathered his brothers and sisters together and had a talk with them. Each of Joanna's children then spent some time with her, saying their goodbyes. Henry spoke with his mother last. A few minutes later his mother died very peacefully.


I truly believe that it is important to assist family members to understand what is going on as someone is dying. With this knowledge, coaching and support, family members are empowered to do what they need to do ­ in their own way. When this occurs, often their loved one may die more peacefully.


Working with Joanna and her family thought me the importance of educating and empowering families. My intervention only took a few minutes but I believe that it made a difference in how this family was able to deal with their mother's death and in their own bereavement.


© Leece, Suzanne. (September 2006). "Joanna's Story" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Suzanne Leece, RN, BScN, CHPCN(C)
Certified Hospice Palliative Care Nurse
105 Ontario Street, Brantford, ON N3S 7J7 CANADA
519.759.5010,
sleece@bfree.on.ca


Selected Journals of Successful Hospice Care


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