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Thursday, May 14, 2015

End of Life Decisions: The Social Worker Perspective

A Conversation between Two Specialists

by Allie Shukraft and Lizzy Miles

At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population. These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss some of the differences and similarities between these two seemingly divergent specialty populations. Allie and Lizzy also describe their social worker roles as they relate to their patient groups.

This article about decision making at end of life is the third article in a series of planned joint conversations into these populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions)

Decisions, decisions

Allie: In the pediatric palliative care world there are decision-points throughout the illness course, all of which are times at which our team would be consulted, if I ran the show. Decisions can be treatment related -- do you want a tracheostomy and g-tube for your child -- or life and death decisions such as withdrawal of no longer beneficial medical treatment, as well as a wide range of those in between. Sometimes these decisions are raised more as the plan of care than a choice point. Although it is likely not the intention of the attending or surgeon to limit the parents’ choices, the message sometimes comes across as “of course you would get the trach for your child. Without it s/he will die!” But these decisions are complex ones, colored by so much more than life and death, or even comfort and discomfort.

Parents get input from their friends and families, the community, even TV, movies, and the news about “the right thing to do”. They also have to consider their faith, their own values and morals, and the most important part that those of us on the medical team often forget about or know nothing about, how their decisions fit into their own family. The single mother with 3 children who has to work to continue receiving her benefits who is now faced with a newborn coming home with a trach and vent, something which means she will get little in the way of nursing over time, might make a different decision that the couple facing this in their first child when one of them is able to stay home from work.

Lizzy: In geriatric hospice care, the first decision that comes up is the choice for hospice. This is sometimes a conversation that happens over weeks. A family may initially decline hospice and then, when they see for themselves that the treatment is burdensome or not effective, then they concede to talk with the hospice admission nurse again.

Upon admission, sometimes well-meaning family members tell us not to tell the patient that they are on hospice. They believe they are protecting their loved one, but when you talk to the patient, often they have an understanding of their own condition. The next decision could be to sign a DNR (Do Not Resuscitate) form if there is not already one in place.

While on hospice, the acceptance of the administration of pain medicines, the decision of whether to treat infections, and even after-care (burial or cremation) can be points of disagreement for patients and families.

Who’s in charge, patient or family?

Allie: Unlike in the adult world, the patient does not run the show, and it is not just about the patient. The child is not the decision-maker and parents can choose to keep information from the patient, up to and including diagnosis. On the whole, this is not something that anyone in the medical field would advise the parents to do. Studies show that parents who talk to their child about his or her illness and even death feel no regret after the child dies. Although we still see parents strive to keep things from their children, especially younger children who they fear may not understand, it seems like, anecdotally, more and more parents are involving their children in discussions about their diagnoses and treatments as well as having them take an active role in decisions around their own end of life. 

Lizzy: The patient does not always “run the show” in geriatrics either. While we try to have the patient be the primary decision-maker as much as possible, many elders over the age of 80 have some form of cognitive decline. With elders on hospice who have a dementia diagnosis, you are working with the family as decision-makers. Hopefully there is a clear next-of-kin decision-maker or a designated health care POA. If not, then my job gets more complicated if there is dissention.

The role of the social worker

Allie: We have to negotiate the fine line between advocating for the best interests of the child and the long-term best interests of the family. In conjunction with child life specialists we try to educate the parents about what other families have done with communication. Another role for us is to provide a safe, non-judgemental person to weigh their options with. Since self-determination is a core social work value, we want to be sure that parents understand that we will support their decision, no matter what it is.

Lizzy: We work with the family to ensure patient autonomy whenever possible. Family members sometimes believe that a health care power of attorney allows them to override a patient. We gently have to instruct them that as long as the patient can express their own needs and goals, we are going to ask the patient first.


Lizzy: I always try to circle the conversation back to, “what would [the patient] want?” Family members can get caught up in the own fears of loss and sometimes forget to put the patient wishes front and center. In an ideal world, they would have had the conversation about “wishes”, but the reality is that most families have never had in depth conversations.

Allie: This works well in pediatrics too, although sometimes it is a bit more abstract because the patient is an infant or limited in how s/he communicates so the parents have to think more in terms of “what do you want for your child?” Very few parents have had the conversation with their child, regardless of age or prognosis, and I can’t say I blame them for that. Normalization and validation are important interventions in times of decisions. We strive to normalize their thought processes and validate their choices and the struggle between settling on one of two options, especially if there is no clear easy choice, such as in extremely rare conditions where the parents have to make decisions based on limited or missing information.

Family Dynamics

Lizzy: There can be situations in which there are inconsistent views within the family. If we identify that our hospice team is getting mixed messages from the family, then we will set up a family meeting and try to get all the dissenting family members in the same room to have an open discussion. This can happen with or without a designated Power of Attorney. Sometimes the designated decision-maker needs or wants support from hospice team members to explain their choices to the rest of the family.

Allie: Typically parents are on the same page, or close to it. Often the team sees one parent primarily in the hospital, either because the other is working or not involved. Sometimes, when we assume that parents are both considering opposite choices, an open conversation laying out all options and encouraging both parents to outline their thought processes will show that they are on the same page, or very close in their thinking.

Parents who have split or divorced and now have a new partner in their lives can sometimes make for tricky dynamics also, especially if the step-parent plays an active role in the child’s life and there's tension between that person and the other parent. Again, open communication with all players involved is often the key here. In the modern world, what defines family is widely varied so we try to allow the core family, the child and parents/guardians to tell us who is in their family and how they should be involved.

Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. You can find her on Twitter @alifrumcally.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio at Greystone Hospice. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

Photo Credit: istockphoto

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