Children’s Hospice and Palliative Care Coalition and Coalition for Compassionate Care of California are partnering to develop a program to train pediatric care teams in having meaningful end-of-life discussions with families of seriously-ill children, and utilizing POLST to document wishes for treatment. CHPCC/CCCC will adapt the existing POLST curriculum to reflect the specific needs of pediatric care providers. The project is being funded by the California HealthCare Foundation.
The primary goal of this project is to provide pediatric patients and their families with access to quality, compassionate end-of-life care. By training pediatric care professionals to facilitate meaningful conversations about treatment options and goals of care, families with seriously-ill children can make informed choices and healthcare professionals can provide treatment that is line with those preferences. An outcome of the program will be the development of POLST leaders in the pediatric care community who can then train and mentor their peers. A final version of the pediatric program will be available in the Fall of 2011 with a minimum of three trainings scheduled for Winter 2011 and Spring 2012.
How can a form printed on bright pink cardstock help a family and a medical team through one of life's hardest conversations? The Physicians Orders for Life-Sustaining Treatment or, as it is more commonly known, "POLST," is more than a form; it is a conversation catalyst. The POLST promotes clear, concise and honest dialogue between the medical provider and family as they discuss end-of-life healthcare planning. Once completed, the POLST is honored across care settings-in the community, at respite, and in the hospital, freeing families from repetitive, difficult conversations.
Your baby daughter is in a hospital exam room undergoing a test. You are not allowed to be with her. As you stand alone in the crowded hallway, an intern rushes by and utters two words, “It’s fatal.”
Or this: You receive a phone call. A physician who is not your primary doctor tells you that “the cancer is back” and there is “nothing more we can do.” He goes on to say, “Call if you have any questions.” You are left to figure out how best to care for your daughter in the last months of her life.
How can we improve the way doctors engage in end-of life conversations with families? Now a new legal document is available in California that promotes clear, concise and honest dialogue between the medical provider and families. It is called Physician’s Orders for Life Sustaining Treatment (POLST.)
POLST is a physician’s order that outlines a plan of care at the end of life. The POLST provides the family of a child with a life threatening condition an avenue to spell out clearly what kinds of intervention they choose for their child at the end of his/her life.
Choices include every kind of medical intervention, from comfort measures to invasive treatment measures designed to prolong life such as intubation and mechanical ventilation.
The POLST by itself is just a form. In order to be used correctly, it must generate a discussion between the family and the medical team about treatment options at the end of life – or when the possibility of death is being discussed.
Families who have been faced with the agonizing facts of their child’s approaching death are uniquely able to give hard won advice to the medical community about end-of-life medical conversations.
The California Coalition for Compassionate Care that is spearheading the POLST initiative has asked the Family Advisory Council of the Children’s Hospice and Palliative Care Coalition to make recommendations about how best to utilize the POLST in the pediatric community.
Here is what they have to say:
First and foremost, in order for to use the POLST effectively, the medical team must carefully define each treatment option, discuss how each option will effect quality of life, and explain who will provide the treatment and where. Said one parent, “Professionals need to take responsibility and guide parents through the options and the consequences of those options.” “They need to explain the players on the medical team. The titles don’t make sense to us. We don’t know what they do. Tell me why they are specifically important to my family.”
Another said, “I look back and its like I was making decisions in the dark. They said I should make choices I felt comfortable with. Comfortable? Come on, my child is dying! No choice is comfortable. I hate that word.”
Honest information in plain language is important: “It was hard for me to process what the doctor was saying. I didn’t understand all the terms but was too stunned to ask.”
Combined with compassion: “I look back and I can’t remember the exact words in the medical conversations but mostly how we were talked to and treated as human beings.” Another parent said, “To hear the words is hard enough. But when he talked about it like he was talking about the weather, it was really too much to take. This is my baby we were talking about! I wanted to say, “Do you have children?’”
Comfort measures are medical treatment. One mom states, “When a doctor who has told you over the last 2 years what is next in your child’s treatment plan tells you, ‘there is nothing more that we can do,’ you believe him. When the doctor told us that, we didn’t know that there were comfort measures that could be taken. We literally thought, there was nothing more that he could do for our daughter.” Another mom says, “Doctors need to talk about comfort measures early. Families should always have that on the menu.”
Relationship matters: “It is important to be human as a doctor. Your humanity will help because the family is feeling very vulnerable. Don’t withdraw behind the white coat. I want to know what you have to say both as a doctor and as a dad.” Another mother said, “Our doctor told us not to look on the internet. He didn’t know me. I am an information gatherer. That is how I cope.”
Inclusion of the child in health discussions, if appropriate recognizes his/her personhood and can lend some sense of control over frightening circumstances. “Everything should be explained to the child if he or she is old enough. Sometimes the medical staff would talk to us and completely ignore my child as a human being. If nothing else, they could at least talk her through what they were doing.”
A family’s values, ethics and faith, not just medical facts may play a major role in decision-making. When explaining why they decided to forego experimental treatment with very low probability of success, one parent stated, “We are a family of strong faith. We knew that even if he died, he would be okay.” Her 8 year old son had told her, “Mom, I am sorry you are sad. It sucks that a kid my age has to die. But I will be ok. I will be in heaven.”
Validation of parents: “It is important to hear from the doctor, “You have done everything you could. You are a good mom. Whatever you choose to do, trust that you are making the right decision.”
Validation of child’s unique place in the world: A parent states, “Each child is special, in body and in spirit. It’s important that the doctor recognizes that he’s not just a patient in a bed.”
Appreciation and gratitude: And finally, every family appreciated and valued their child’s medical team. “There were a few isolated incidents, but 90% of the time people were very caring, sympathetic and helpful. We knew they cared about us as people.” “I have respect and gratitude for the medical community. They were able to diagnose my daughter and give her state of the art treatment.” “I feel for the doctors. They have such a hard job and have to see so much sadness every day.”
The POLST can facilitate clear, honest, compassionate, and mutually respectful conversation about the last days of a child’s life. Using the POLST as a guide, informed choices can be made. “When he died,” a dad said, “we felt sadness, relief, peace, and gratefulness that we could hold him at his last breath.”