What is POLST? How can a form printed on bright pink card stock help a family and a medical team through one of life’s hardest conversations?

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.

The Physician Orders for Life-Sustaining Treatment or, as it is more?
www.childrenshospice.org/hope-2010-articles/30-POLST.pdf

How do I keep my child’s care in perspective, what are the ethical considerations?

Inherently there is an imbalance of power for parents in the hospital setting. It’s important to remember that you are you are the expert on your child. You know what helps to comfort them, you’re paying close attention to what’s happening to your child on every level: physically, socially, emotionally, spiritually. You can tell when they are in pain, when they are afraid, sad, confused. You are your child’s first line of defense. All the medication in the world couldn’t replace your love, fierce dedication and vigilance. Follow your instincts as a parent, trust your gut, stay in your power as a parent- you know your child the best.  David Browning, in his letter to the editor states:

    Dear Sir,

    It is common in pediatric medical settings, as in the broader culture of medicine, to understand the healthcare disciplines as modes of professional practice, but uncommon for parenting to be acknowledged as a practice. Even in healthcare systems that routinely proclaim their family-centeredness, it is unusual for the knowledge and expertise of parents to be granted the moral weight and cultural respect connected to practice. Yet, parenting is indeed a practice, drawing from a rich storehouse of learning that includes observation, experiential learning, and the generational transfer of knowledge. Parents invest in their practices by adopting a range of learning strategies – seeking out mentors, learning collaboratively with peers, and reflecting upon their accumulated tacit knowledge. This investment is heightened in families of children with chronic illnesses and disabilities, given the higher stakes involved. These parents routinely become skillful at advocating for their child, navigating complex medical systems, and making complex, ethically challenging healthcare decisions. The strength and depth of this kind of parental practice is captured in the following account by a parent from our faculty team (MC).

More on these issues from our members.

www.sharingwisdom.us/Lorry-Frankel-MD/

www.sharingwisdom.us/Deborah-Dokken/

What are some key factors in effective communication between families and clinicians?

I want the doctors to provide me with the answers to what’s in my child’s best interest.

Yes, medically, doctors can present treatment options for your child but those may not be what is best for your child or family as a whole. A clinical intervention that may seem to work in the moment may cause problems down the road. You are a critical decision maker in your child’s treatment, it’s your responsibility to keep the big picture in mind. Ultimately, you are the one who will have a lifetime to live with the decisions that are made so you best be informed as possible and participate in the conversation.

How can I help clinicians to see my child as a person and not just a patient?

Line your hospital room with pictures of your child, put them on doors, walls, make your hospital room a place where you want to spend time and fill it with items that comfort and are of interest to your child.