Saturday, June 20, 2015

Getting Started at the End of Life: Two Social Worker Perspectives

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 the initial social work role in hospice and palliative care is the fourth article in a series of joint conversations into these populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions)

Pre-admission discussions

Lizzy: There are multiple stages during end of life where a hospice social worker might get involved. I have been asked by facility staff to have the initial conversation with families about hospice. It used to surprise me that I would be talking about hospice to the family before the physician does, but now I understand. The patient may have seen a specialist and received a Stage IV cancer diagnosis, or they have had a series of sudden changes. The nurses and aides at a facility see the patient every day and may themselves believe hospice would be beneficial, but don’t feel comfortable having the “hospice” conversation with families by themselves. I may be told that the family is not yet aware of the patient’s eligibility for hospice, and my role is to provide information about hospice for the family to make an educated decision. My goal in this meeting is simply to listen, and when appropriate, inform. I do not have an agenda to “sign them up” for hospice, and I think they are grateful that they are not pressured. It takes time to come to terms with the idea that a loved one is dying.

Sadly, there have been times where, by the family’s description, I can sense the patient is very close to actively dying. In some cases, I am the first one to really talk to the family about the immediacy of the situation. Usually this initial conversation happens with the family away from the patient per family choice. In these meetings, the family generally has a lot to say about the history of the patient’s decline. They may want to talk about every hospitalization and medical experience they have had over the past few years. I take the time to listen to their extended stories. Active listening involves reflective statements and acknowledgement of all that they have been through. I want them to feel they are not alone and that we will get through this experience together. I can usually tell whether they are emotionally ready for hospice if their stories thematically touch on futility and a patient’s continued decline, despite all efforts for curative treatments.

Allie: The start for an inpatient pediatric palliative care social worker is often different, less “urgent” than it can sometimes be for hospice. In the pediatric world, the inpatient medical teams often struggle with when to consult our team. With some diagnoses, we are consulted immediately because we know that the diagnosis typically causes a child to lead a shortened life span. However, with others, this can be a more nuanced discussion. The talk of the possibility of death, or even the fact that the child is “seriously ill” at the moment can be too much for some families, and even for some physicians. Many pediatric palliative care programs have chosen to change their names because of the stigma surrounding the word “palliative”.

Our team is known as the Pediatric Advanced Care Team (PACT) because we looked at studies that showed medical teams more readily referred to these teams than teams with the word palliative in their name. Often, when I introduce our team to a new family, I will make sure to explain that we are also known as the palliative care team, and to explain our definition of this term (providing added support for patients and families dealing with serious illness). Sometimes I will try to put the child’s current condition into perspective, explaining how sick s/he is in the context of the hospital. This is not to dishearten families, but rather to help them find that balance between hope for cure and acceptance of a potential reality that they may not want.

Of course, as you mention above, I tailor that initial meeting to where the family is at that moment so that I can join them there. It is crucial to convey that what they want to tell me about their child or themselves is important and that I have only a minor agenda at best. This can also present a challenge because when the diagnosis or situation is not as clear cut, we are often consulted at certain “decision-points”, times when family members have to make a choice about whether to treat a problem or not. A common example from our experiences is the decision to have a tracheostomy placed to make breathing easier. For some parents, this is a relatively clear-cut decision. The trach is intended as a short-term intervention that will help the child to breathe until s/he grows and can have it removed. For others, however, deciding to have a trach placed in their child can be the signal of a permanent decline in functioning or a change that will limit their ability to do things. Although some patients with trachs can move freely, others must remain tethered to a ventilator, which, though use of this can be taught to most parents, presents families with a huge change in their child’s and their own mobility. Although many times in these situations we have an opinion about what we might do in a similar situation, we are often reminded that we do not know the entire family context and how this decision fits into this context. We do not know the family’s belief systems, or other thoughts about morality that may steer their decision-making, so it is vital to advise and answer their questions completely, but ultimately let them know that, no matter their decision, we have their back as best we can.

Information gathering at admission

Lizzy: My role in the admission meeting is to try to build rapport with patients and families. My approach varies with every admission that I do, contingent on the situation. The exciting part of the hospice social worker job is you never know what to expect, and you need to be flexible and immediately responsive to the situation. If we are admitting someone as they are dying, I’m going to focus on the immediate needs of the patient and family. I will ask direct questions related to the family’s expectations surrounding time of death. I have found that it is helpful to know whether families wish to be present when the patient dies. If they say they do want to be there, then I provide education regarding patient choices and how the patient may pass when the family is not present. I will ask about funeral homes. I tell families they do not need to know exact arrangements, but it is helpful for them to know in advance who they are going to call “when the time comes.” With late admissions to hospice, it is common for families to say they have no idea what to do regarding funeral homes. I ask them if there are any funeral homes that they have used for other families.

For all admissions, I also try to find out the patient’s and family’s previous experiences with death and/or hospice. This informs me of their expectations. Commonly, patients and families will assume that this death will be like the others they have experienced. If they had negative experience previously with a loved one in pain, they may assume that pain is inevitable.

Finally, I aim to get to know the patient as they see themselves. I want to know what and who is foremost to them. One time I made the mistake of using a label that a daughter had provided to me. She called her dad a “biker,” but when I asked the patient about being a “biker” he became upset. He had a different vision of bikers, and did not want to identify with that subculture. That was a significant lesson for me to not necessarily adopt a family member’s visions of their loved one.

Allie: My role is very similar, and building that trust is key. Parents whose children have serious illness often have to make very difficult decisions about how their child will live or die. For many of these decisions, the outcome is unclear, so they struggle even more to know which way to go. By presenting ourselves as non-judgemental resources who will give input but will support the parents regardless of their decisions, we become that person that a parent can say something that feels awful, unspeakable, but in reality, is likely something that some other parent has said or felt before them. Permission is a big part of setting this up and something we talk about right from the start.
Also in the pediatric world, we find that not only is the family’s loss history important but so is their health history. More and more, when we talk with families about the decision to have their child get a tracheostomy, they have had some experience with someone they know who has had a trach. This can create problems, if for example, this was a scary experience for them when they were a child, or perhaps a negative experience but the medical technology has vastly improved with time. However, it can also be helpful for family members to know what they are in for with a certain decision.

Building rapport

Lizzy: My approach with patients and families is to present as open, interested and caring. I try to have 100% focus on the present moment. There have been admission visits with one patient and there have been admissions with 10 family members watching the discussion. I am an extrovert and I think that might help me be comfortable with meeting new people. Another trait that is helpful is to come across as non-judgmental. Social workers see all kinds of living situations and family dynamics. Sometimes we’ll observe that a family member feels guilty for how often they visit (or don’t visit). I spend a lot of time normalizing feelings that patients and families have.

Allie: Yes, being non-judgemental about social and family situations are also important. One of the roles I see as my job is to understand the context in which this family is operating. Who in the family is working and what does their money go to? Who makes decisions? Who provides emotional support? Who is the spiritual rock? As an adult with several unique family dynamics in my own life, I think this helps me remember that family is what you make it, and by understanding what they have made their family, I can help others understand why they may not make the choices we think they should, such as “not visiting enough” or “not getting enough sleep”. Unlike you, I am an introvert, so my style might be a bit quieter, but I do have dimples and smile often, so that helps get my foot in the door sometimes. I often will break the ice with an observation about the patient or a sibling, which helps show that interest that you mentioned. There are families that I meet with who are also introverts, and this can be a bit awkward, but I just figure if I keep asking questions, I will eventually land on a topic of interest for someone in the room and we can go from there.

Note: If there is a topic that you would like Allie and Lizzy to cover in their articles, please do send us a note

Click here for more Pallimed posts about social work.

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

Pallimed | Blogger Template adapted from Mash2 by Bloggermint