Mastodon Beyond the Primary Caregiver: Supporting the Other People in a Palliative Patient’s Circle ~ Pallimed

Monday, May 9, 2016

Beyond the Primary Caregiver: Supporting the Other People in a Palliative Patient’s Circle

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 addresses systems theory and how we can provide support for additional people in the palliative patient’s life, beyond the primary caregiver. This is the fifth article in a series of joint conversations about the similarities and differences with pediatric and geriatric specialty populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions, Getting Started).

In many articles about hospice and palliative care, there is an additional emphasis placed on supporting the caregiver in addition to the patient.  In our work with patients, we are often asked to identify the “primary” caregiver so as to have a point person for our communication. We know, though, that there are often many more people in a patient’s life that are affected by their terminal disease. Often we have face to face encounters with these additional loved ones. This article intends to identify the types of additional people we often see in pediatric and geriatric settings, and provide suggested interventions on how we might be able to practically provide support.

First and foremost though, let’s talk about the primary care provider in each respective specialty.

Allie: In the pediatric world, many of the conversations and even interventions are aimed at the parents who tend to be the primary caregivers for palliative care patients. Whether this is one person or more depends on many factors: are the biological parents married or even together in a romantic relationship? If they are not together, are they amicable and choosing to co-parent? Are both birth parents alive and are they both of age to consent (this varies by state)? Are there additional significant others in their lives, such as other spouses who are now step-parents? Is the patient adopted or in DSS custody? Are the primary caregivers foster parents, extended family members providing care for one of a number of reasons, or is the primary caregiver some other person who has informally assumed a role in this child’s life? Although it can be uncomfortable to ask these kinds of questions (for example, I have learned by trial and error to ask vague questions such as “how are you connected to this child?” rather than assuming questions such as “are you Grandma?”).

It is important for several reasons to assess these relationships. The medical team needs to know who is caring for the child, that the adults in the room are capable of and legally entitled to make decisions for the child (and receive medical information from the team), and that the child will be safe and well cared for upon discharge. We now live in a world where, increasingly, family is defined by the systems in which the children operate, rather than by biology.

Another thing to consider in the pediatric world is the patient’s age. Although our typical patient is 18 years of age or younger, we sometimes are able to extend our services to older patients because of their diagnoses or the duration of their treatments. For example, many pediatric oncology or cardiology programs will follow patients with pediatric diagnoses well into their twenties. For these patients, their own significant others often take over as primary caregivers, sometimes in conjunction with the patient’s parents, sometimes on their own. This can put a huge strain on a young relationship which, as many of us may remember from our early twenties, likely faces many challenges already.

Lizzy: To begin with, the age range for someone who is considered a geriatric patient is expansive – covering more than forty years, if you define geriatric as over the age of 65.

The nature of the relationship of primary caregivers we see with the geriatric population are widely varied. The primary caregivers who are family members might include: spouse, sibling, sibling-in-law, child, child in-law, niece, grandchild, great niece, great grandchild, ex-spouse, ex daughter-in-law.

Other than family members, primary caregivers can include: friends, lawyers, professional care managers, and guardians.

One might assume that younger patients are more likely to have a caregiver that is a spouse, but I have had many patients in their nineties whose primary caregiver was a spouse who was also in their nineties. You can also have a geriatric patient whose caregiver is their parent. It is less common.

Let’s now identify the peripheral people that we come into contact with in our day to day care of the patient.  

Allie: In the pediatric world, this typically encompasses grandparents and siblings, with extended family, church community members, and members of other systems in which the patient participates (which may include school staff and classmates, teammates, scout troop members, and various other communities). Although these people likely care about the patient a great deal, many of them have never gone through a child’s serious illness before so they often benefit from guidance of some kind. The type of guidance varies, but often having a specialist such as a Child Life Specialist or a Chaplain or Social Worker speak to these people about what is helpful and what feelings are normal can be beneficial.

Although the patient and the identified immediate family are likely the ones hit hardest by the illness, others will feel it too, and they may be unaware of how their experience differs from that of the immediate family or what they can do or say to be helpful. To be fair, when faced with someone else’s pain, it can be difficult for anyone to “just be there” as we often want to provide comfort or “fix things” in some way. Phrases that are intended to be helpful in this way (such as “well at least . . .”, “stay positive”, or “everything’s going to be fine”) can actually serve to minimize the patient’s experiences and can damage trust and even end relationships.

Lizzy: For elders, it may depend on how social the elder was and how many organizations or communities the elder knew. Obviously, there can be other family members besides your main contact. These other family members may be all the ones that are listed in the primary caregiver section above. In addition to family it’s powerful to see how many other people can show up to visit the patient. When there is a revolving door of visitors, you know this patient is going to be highly missed.

If a patient lives in a long term care community, there are two main groups of visitors beyond family and friends: other residents and facility staff members.

If a patient lives at home, the additional people you might come into contact with are: fellow congregates from their church, former co-workers, friends and neighbors.

Supporting the network: Start with gathering information

Lizzy: The first thing to do is to have a conversation with the patient and with the primary caregiver about who is the most important of their family and friends.  Sometimes you learn that simply by who is present during the admission.  I have admitted patients to hospice with an audience of 10 people in the house. Everyone wanted to hear the information that was being provided.

Many hospice admission packets ask about information disclosure. When you are covering this information and they get fatigued by trying to list everyone they can think of, including in-laws, you will get an idea that they have a large, open system.

Suggested Intervention: Ask the patient, “Who is most important to you?”

Supporting the network: Traffic control

Allie: One of the things that any pediatric nurse worth his or her salt will do is take on the role of the “bad guy” and limit visitors, whether this is because of hospital policy or patient or parent wishes. One thing that many people don’t realize is how much energy being sick or taking care of a sick person can use up. Whether you are active all day or just spent most of the day sitting there, watching your baby who is too sick to hold, all of the conversations you have had with staff and family, as well as all of the worrying and the stress of life with illness can take a toll. As professional caregivers, it can be helpful for us to suggest limiting the number of people in the room with the patient, keeping visits short, or even turning people away who are not needed or when someone in the room is sleeping. Depending on the circumstances, this can mean staff as well as visitors and even close family and friends. Sometimes a patient or parent need our permission to do this; at other times, they need us to step in and limit visitors or turn people away. I have had parents tell me that they would not turn people away because it would feel rude but then beg us to keep everyone out. It is also important that we do not ask the caregiver or patient in front of the visitor if they are allowed in. This places the power back on the patient or family, rather than the staff member.

Lizzy: It is not our responsibility to decide who should visit and when. Our role is to support the patient and family to ensure the visits are helpful and wanted. We need to encourage the patient and caregiver to set boundaries if they are tired or do not feel up for visits. They might be exhausted and not know how to defer visits to another time. We can offer suggestions for how the caregiver might manage the visitor schedule. Understand that it is not uncommon for caregivers to choose not to send people away even though they are tired…and that is okay as well.

Suggested intervention: Provide suggestions to caregivers for what to say to defer visitors (if desired) and/or how to set up a visit schedule.

Supporting the network: Emotional support

Allie: At times in the pediatric world, visitors can feel like they don’t know what to do or say, and they may struggle with feelings of inadequacy as a support or like their role in the child’s life is unimportant, possibly because they are given that message by the patient who might ignore them or have low energy, or perhaps the parent did not acknowledge them as they expected. It is important to thank anyone who visits while you are there and acknowledge that it can be difficult to know what to do or say and that their time shows they care. It can also be helpful to offer them the same presence that you would offer a patient or family. Offering a silent, safe space for these visitors can allow for them to share about whatever they are feeling or thinking about. Possibly they are burdened by a “normal” life problem that they feel they cannot share with the parent. Perhaps they are feeling that their own relationship with the patient has been devalued because s/he is not their child, but perhaps still holds a significant role in their lives that you can acknowledge and validate without criticizing the parent for how s/he is handling it.

Lizzy: If we are present when the patient has visitors, one of the best things we can do for the visitor is to acknowledge their relationship to the patient. If the patient is non-responsive, our role may be one of education. We can inform the visitor of the patient’s ability to hear. We can give them suggestions for what they can do for the patient, such as apply washcloths to forehead, sing, tell stories or pray. We can facilitate storytelling and life review by asking questions. We do have to be careful about the information we provide if the visitor is asking questions and they are not on the approved HIPPA list. Even if we do not talk about patient condition, we can give general information about symptoms that the visitor observes.  If the visitor brings food for the patient, we might provide general educational information about how the patient may not have an appetite.  Finally, we can inform the visitor how to access bereavement services if they are desired.

Suggested interventions: Acknowledge the visitor’s feelings and allow space for them to explore what they need from you and how you might meet these needs without taking away from the family.

More social work posts on Pallimed

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. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

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