Palliative care should be a phased conversation about a supportive and holistic treatment with benefits

Maria Rugg welcomed a small group of health care staff and parents to the Toronto Central Palliative Care Network events to celebrate National Hospice and Palliative Care Week. The expert panel was asked to reflect when in the trajectory of a disease should 1) the child and 2) the parents and family be made aware that the child may die and palliative care be introduced. While palliative care guidelines suggest palliative care be introduced when the family is ready or depending on the type of disease, Maria highlighted a 2000 JAMA study, Understanding of Prognosis Among Parents of Children Who Died of Cancer: Impact on Treatment Goals and Integration of Palliative Care, which found on average that doctors knew twice as many days prior to parents as to the likelihood of death. The study concludes: "Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care."

Maria then introduced the SickKids panel of experts. The notes below were hand written and attempt to capture some of the highlights. Some comments relate to two case studies, a 3 year old boy with cancer and what a young child can understand about a life threatening disease and an 11 year old girl with CF facing the choice of a lung transplant whose parents do not want her to have a choice to decline the treatment. The notes below mostly relate to the more general question of when and how to talk about palliative care.

Christine Harrison, Director of SickKids Bioethics Department, emphasized that when we are talking about truth telling we need to emphasize the importance and fragility of the trust between family and health professional and also the complexity of communication, including kind ways of delivering the diagnosis. The point is to allow for thoughtful decisions and for patients and parents to have control over the procedures. Some words are conversation stoppers, like cancer, death and palliative care. Think of a disclosure of a diagnosis as a staged process, not one event. Palliative care is a potential benefit, though not necessarily at the beginning. We understand that the family understanding of palliative care if often the same as end of life care and we can work to move this understanding. Be careful in that the decision is rightly theirs. Patients who feel they have had information withheld from them may have difficulty trusting.   

Oncologist Dr Eric Bouffet: I think the earlier you share the information the better. It can be overwhelming all coming at one time. When you say there is a 5% rate of success the parents often only remember the 5%. With neuroblastoma I explain there may be a 10-15% rate of success however you will hijack most of the child's remaining life with the treatment. In some cases it is important to clarify the options very early and there are times when I have to bypass a parent's desire to hide the reality [from their child]. He said he would not tell the 3 year old child that he might die but would be very pushy to have the 11 year old girl, already included in prior treatment decisions, have a say in the acceptance of a transplant option.

Pediatric palliative care physician Dr Christine Harrison: If this was truly a challenge panel then I would say one must always tell parents when this is an illness that they are likely to die from. It is our obligation that children and parents know as much as they can understand. When you say 'they may die' then the conversation should happen early but not necessarily at the first visit. At a first visit, there is only so much families take in. One of the reasons palliative care is difficult to hear is because health care professionals find it difficult to say. Parents listen carefully to what we say and to what we dont say. If we say palliative care is an option when nothing else is working then we put a very negative value on palliative care. There is a world of difference between 'may die' and 'will die'. Also, we dont 'deliver' news, we deliver newspapers. We share bad news. Think about the words used, what you need to find out. I prepare to ensure they understand and have imparted to me what they need. It should be planned for as soon as it enters the mind of the health care professional. One child heard that we cannot make the cancer better and the child thought she could live with cancer and go to high school and university, marry and have children. She didnt want to give up but she also didnt understand. We should avoid doctors saying 'We could do everything' - families don't know the 'everything' we can do. Rather than the word "owie" to describe cancer, this is an opportunity to teach what cancer is to the youngest patients and his circle of firends. We can ask what does Jeremy know about where a dead cat is or his grandma. Children of 3 can understand a lot. It is key that children know they are not alone and that parents and doctors will do their best to help. Parents wish to protect children from horrible things. If we cannot protect the children from death then we must prepare them.

Parent, bereaved parent and frequent palliative care speaker Valerie Macdonald began with her own experience: When do we tell parents there child may die? Possibly not at the beginning when we hear there is an 80% chance of a cure.  There isn't a right time. Disclosure meetings were very busy and it was hard for me to absorb information. It is important to check what parents understand. To me, the words 'Phase One Trial' means to the doctors that the child is likely to die. What is often glossed over is what palliative care is. Palliative care is a viable treatment option. Palliative care is supportive therapy. Palliative care is a holistic approach to improving quality of life relieving symptoms and helping the child and the family with the process of dying. I believe there are some treatments that are worse than dying. Palliative care is a supportive treatment that lets the child develop to the best of their abilities in the time they have remaining. 

As participants reflected about the cases and choice of timing and inclusion of young children some very clear points about the importance of the palliative care discussion, barriers caused by staff themselves, and the need for parents to be told over time about the benefits that palliative care offer.

For me a distinction between 'delivery' versus 'sharing' over time a life-threatening diagnosis was important. Beyond the issue of staff who do not speak about palliative care at all with their patients, or who 'wait' until way too late to start to talk about it, there is the issue of a quick delivery that parents will not take in, or may instinctively recoil from, that does not allow time and trust to develop that allows families to value palliative care or palliative care workers.

I wish to thank the panelists for their thoughtful contributions and also thank Adam Starkman of SickKids Foundation for coming to learn about palliative care from a staff and parent point of view.

Adam reflected that there are many examples of family-centred care that he talks to funders about, such as the playroom off the Atrium where siblings can hang out and play and do homework, and the panel showed him that discussions between staff and families to explore palliative care, separately from end of life care, exemplifies family-centred care.

Patient and Family Centred Ethics

The March 2008 Newsletter of the Canadian Bioethics Society includes pointed calls to action on the ethics of patient and family centred care by President Patricia Rodney and Sue MacRae, Former Deputy Director, University of Toronto Joint Centre for Bioethics. They are short and I quote them in full below, please view CBS's March 2008 newsletter to see them in the original, as well as the short analysis of concerns about the College of Physicians and Surgeons of Manitoba (CPSM) “Statement on Withholding and Withdrawing Life-Sustaining Treatment”. Bioethicist.ca has an archive of past newsletters.

Sickkids Hospital has a Department of Bioethics affiliated with the University of Toronto Joint Centre for Bioethics. Unfortunately the website for the department is currently missing in action (I emailed the web team and hopefully the resources can be recovered). The Director of the Department of Bioethics at Sickkids Hospital is currently Christine Harrison whose primary area of research interest is identified as "ethical aspects of health care decision-making for and by children, complementary and alternative health care, and end-of-life care for children."

Christine Harrison is also past president of the Canadian Bioethics Society and her February 2002 President's Letter tells the poignant personal story of her mother's death and lessons she drew from it:

"This year’s annual meeting was the first one I have missed. The day I was meant to fly to Winnipeg my mother was admitted to hospital; she died a week later. A couple of months earlier, after two misdiagnosed UTIs, she discovered she had very advanced bladder cancer, for which she declined surgery. (This was fortunate, as another ‘medical error’ had missed the fact that it had already spread to her spine). There is no palliative care physician in our city of over 100,000 people, and her pain was not managed well. I don’t think that, for her, her death was particularly better or worse than for many others. I would like to be able to say that she got good, or even adequate, medical care in the hospital, but I cannot because I never spoke to her physician. Her nurses, social worker, and case manager promised to tell him that I had questions and would appreciate being well informed. I can’t say if this was charted, as I was refused permission to look at her chart. He did write me an almost legible note on Monday, saying that he had a hunch that my mother would be discharged by the end of the week (she died on Wednesday). We waited for some test results for several days (we thought she might have had a stroke) – finally my mother’s ‘roommate’ told us that the doctor had told my mother several days earlier the results of the tests (my mother did not remember this). We received flowers from her physician after her death, but I have still never spoken to him.

As a daughter I am angry and sad. As a bioethicist I am frustrated. Over the past two decades or more we have argued eloquently of the obligations to care for the dying, attend to their pain and suffering, and to the needs of their families. Studies have been published identifying these needs. We write policies and reports, we speak, and we teach and teach and teach. Yet from the stories I am told my experience appears to be the norm rather than the exception."

Christine ends by stating: "We do need to work together in a variety of ways to ‘speak up’ more effectively so that our words and our convictions result in positive changes in the world –
otherwise, we’re just talking to each other." Read the full letter in its original to see some of the work-a-day detail when medical professionals and ethicists viewpoints collide.