Saturday, March 30, 2019
It has been an amazing year for those of us who are palliative care social workers. The 4th edition of National Palliative Care Guidelines, published this fall, adding several psychosocial focused domains to the list of best care practices.1 Many of the 8 domains specifically highlight the expert skill set of social workers on the interdisciplinary team. Palliative care social workers were delighted to see these highlighted in the guidelines. Palliative Care teams work best when they allow members to practice to the top of their license. Although there is often overlap, especially in the arena of psychosocial care, social workers are usually the backbone of providing these services.
We saw the FIRST advanced practice, evidence-based certification for palliative care & hospice social workers open for testing in January 2019: a significant step for social workers in a concerted effort to be recognized and respected for our work within the field. The APHSW-C certification was the result of years of work, spearheaded by Barbara Head and the leadership of Social Work in Hospice and Palliative Network (SWHPN). Comprehensive, evidence-based standards were developed and reviewed by experts in the field.2 The result is a pathway for pc and hospice social workers to validate their special skill set, which may, over time, lead not only to increased validity but more leadership and financial opportunities. Hopefully, this advanced practice certification will lead to increased financial opportunities such as pay increases for those with the certification, as well as creating the potential for inpatient palliative social workers to bill for their services, and increased opportunities outpatient billing.
While this acknowledgment and use of the social work skill set is a great step forward, we still often struggle to “prove our value” to many medical teams, some of them even our own. We cannot bill for our inpatient services, unlike other team members, and this has often led to needing to assert our skills and impact perhaps louder than others (I have a particularly “loud” reputation!). Many PC teams still don’t have a PC SW, or are understaffed by national standards.3 It’s a difficult problem, funding a position that cannot generate direct revenue. However, more and more data point the important role of psychosocial care, as evidenced by the 2018 guidelines. We know intuitively, the expertise of the social worker impacts the quality of care for our patients. Sometimes it’s harder to prove this to the folks who are responsible for the bottom line.
Another, more general, opportunity for growth for social workers in the coming year is a shift in where we see some palliative care programs “owned” within health care systems. As Palliative Care moves into the realm of population health including outpatient and home services, there will likely be more social workers in program and administration leadership positions, helping their teams and programs with these initiatives. This focus is perfect for the social work perspective of “person in environment”, first named by Mary Richmond, social worker in 1917. We see transition points in the framework of systems theory, which naturally assesses the patients’ needs in the context of where they are, meeting those needs and anticipating interventions going forward. As palliative care programs move into this home space, we encourage their use of the long-standing and well developed social work theories about how people adapt, change and cope. These skills will serve to enhance our palliative care efforts for the patients, families and our colleague providers.
Another accomplishment for palliative social work at the beginning of the year was the publication of an incredible resource for the health social worker released in 2019: Palliative Care: A Guide for Health Social Workers. Edited by B. Sumser, M. Leimena and T. Altilio, Oxford Press. The outstanding collection of authors lend their expertise to complicated theoretical frameworks, clinical interventions, case examples and a variety of overarching issues related to providing the best care to patients and families. Undoubtedly, this new book will become the teaching resource for social work academic and field work to guide health social workers when working with seriously ill and/or dying populations.
Finally, this year has seen an incredible increase in social workers in palliative care and hospice providing a variety of strategies and interventions to cope with compassion fatigue and burnout. One of the best articles came from Emily Browning on debriefings in the ICU.4 The debrief model has been used in social work for quite some time and translates extremely well to helping our colleagues with moral distress, increasing social support, decreasing isolation – all factors that impact one’s desire to leave the field.
For more Pallimed posts on Social Work, click here. For more posts by Vickie Leff, click here. For more posts by Allie Shukraft, click here.
Allie Shukraft, MAT, MSW, LCSWA is a reformed high school English teacher turned pediatric palliative care social worker with Carolinas Healthcare System in Charlotte, NC. She enjoys spending time with her family, trying out new recipes, and exploring the country whenever she can. You can find her on Twitter @Alifrumcally.
Vickie Leff, LCSW, BCD is the clinical social worker for Palliative Care at Duke University Hospital. She uses running and humor (not always at the same time!) as her primary coping mechanisms. You can follow her on Twitter @VickieLeff
References
1. Ferrell B, et.al. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. Journal of Palliative Medicine. 2018;2018.
2. Glajchen M, et.al. Defining Core Competencies for Generalist-Level Palliative Social Work. Journal of Pain and Symptom Management. 2018;2018.
3. Spetz J, Dudley, N., Trupin, L., Rogers, M., Merier, D., Dumanovsky, T. Few Hospital Palliative Care Programs Meet National Staffing recommendations. Health Affairs. 2016;35(9).
4. Browning E. Reflective Debriefing: A Social Work Intervention addressing Moral Distress among ICU Nurses. Journal of Social Eork in End of Life & Palliative Care. 2018;14(1).
Saturday, March 30, 2019
Monday, May 9, 2016
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
Monday, May 9, 2016
Wednesday, November 11, 2015
With all of this input into what I am doing and why I am doing it, I have a significant amount of time to reflect on my practice. When I talk about reflective practice in hospice and palliative care I imagine that most people in health care will immediately think about patient satisfaction surveys, those tools that have a growing impact on how we are paid, how our work is measured, and how we justify our work with data. However, what I am talking about here is personal reflection on our own work. According to Wikipedia, reflective practice is “the capacity to reflect on action so as to engage in a process of continuous learning”. (Wikipedia, 2015) When we truly reflect on our practice, we turn our gaze on ourselves and engage in critical reflection on what we are doing well and what we need to do better. This involves considering our strengths and weaknesses, being mindful of our professional ethics and values within the context of the industry’s ethics and values, and staying current on the evidence base for cutting edge theoretical and practical approaches. In addition, this process is ongoing, requiring repeated self-assessment and adaptation to what you observe about yourself and absorb from the growing evidence base.
One of the coolest ways to reflect on your practice is simply to talk about it. Opportunities for this are growing; there are more conferences for hospice and palliative care professionals and listservs, blogs, and #hpm tweets abound. If you take part in the Wednesday night #hpm tweetchat you will be reflecting. One of my favorite ways to do this over the years had to be when Storycorps came to our hospital. Besides getting to interview several families, I got to spend an hour talking to my then program coordinator, an RN I had been working with for the past 3 years, about what working together had been like. We reminisced about our favorite memories and the patients and families who had impacted us. It felt like a mix of honoring their stories and highlighting our own, and gave us a chance to see our successes, both together and alone.
Of course, one of the challenges to true reflective practice is that involves aligning your practice with an ever-growing evidence base. The number of articles out there in the palliative care world that can apply what to what we do is staggering, both in the popular press and in academic literature. So one of the challenges becomes, how do we keep up? How do we stay current in an ever-changing world? Do we limit our article intake to key changes in the industry? For example there of been shifts in the treatment of certain pediatric diagnoses as technology and surgical techniques have advanced. With trisomy 13 and 18, there was a point where the literature indicated that providing cardiac surgeries for these patients did not show a statistically significant change in either length or quality of life for patients. But the thinking on this is changing and practice recommendations are changing with it.
Join me for the #hpm tweetchat on Wednesday, November 11 where we will be reflecting on our own practices, as well as talking about how to foster reflective practice. Remember, we are talking about how to strengthen our own personal practice or encourage that growth in others, not venting about our workplaces or teams.
Join me @alifrumcally this Wednesday night at 9pm EST to explore self reflection in hospice and palliative medicine.
What: #hpm chat on Twitter
When: Wednesday, November 11, 2015 – 9 p.m. ET/6 p.m. PT
Host: Allie Shukraft @alifrumcally
Follow @hpmchat on Twitter for all the latest on #hpm chats. If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter.
If you do have a Twitter account, we recommend using tweetchat.com, for ease of following. You can access the transcripts and analytics of #hpm chats through @Symplur.
Allie Shukraft, MAT, MSW, LCSWA is a reformed high school English teacher turned pediatric palliative care social worker with Carolinas Healthcare System in Charlotte, NC. She enjoys spending time with her family, trying out new recipes, and exploring the country whenever she can. You can find her on Twitter @Alifrumcally.
Image credit: Image via Wikipedia Creative Commons Attribution 3.0
Wednesday, November 11, 2015
Thursday, May 14, 2015
A Conversation between Two Specialists
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.
Interventions
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
Thursday, May 14, 2015
Tuesday, March 10, 2015
by Allie Shukraft
March 2015 marks two events in the world of American hospice
and palliative medicine (HPM) social worker: National Social Worker’s Month
and the 60th anniversary of the National Association of Social Workers, our largest member organization.
This year’s theme is “social work paves the
way for change”. I love this theme
because it brings me back to a conversation with a hospice social worker who
told me why he loved his job and that I should become a social worker (I
laughed at that point in time . . . little did I know). He said that patients and families in hospice
are making their way through this dark, twisted path in the forest that is
illness. They are lost and confused, and
though they want to find a way out, sometimes there is none. He said his job then was not to shine a light
on the path and make it easier, nor was it to show them the way out of the forest. Rather, it was to walk with them on their
journey and be present.
So what paths are we trying to accompany our patients and families
on as they navigate? Although our patients and families are each unique, there are some common paths that they may tread upon within palliative and hospice care. Social workers are there to meet the bio-psychosocial-spiritual
needs of the patient and family, emphasis on the psychosocial. Yes, what we do
overlaps with some of the roles of our other team members (I envision interdisciplinary team roles like a Venn diagram), but a social worker's training is
specialized to meet the patients and families where they are and help them
determine where they want to go. As part of our Master’s preparation, our
ongoing training, and our licensure requirements, we learn about human
development, psychological theory, the intricate interactions of the systems in
which we operate, and many more specific skills.
On Wednesday night 3/11/15, join me for this week’s #HPM
Tweetchat as we take a look at the psychosocial elements of the work we all do
through discussion of the following topics:
Topic 1: what are the psychosocial needs of #HPM patients and
families/caregivers?
Topic 2: what is the most difficult part of psychosocial care of
the #HPM patients and family members?
Topic 3: how can we measure the effectiveness of our teams at
meeting these needs of #HPM patients and family members?
Join me @alifrumcally this Wednesday night at 8pm CST to
explore the concept of social work and psychosocial needs in HPM.
Special thanks to Lizzy Miles, MA, MSW, LSW and the social
workers and chaplain from Carolinas Palliative Care and Hospice Network for
their input on these thoughts . . . they are invaluable!
Allie Shukraft, MAT, MSW, LCSWA is a reformed high school English teacher turned pediatric palliative care social worker with Carolinas Healthcare System in Charlotte, NC. She enjoys spending time with her family and exploring the country whenever she can. You can find her on Twitter at @alifrumcally
Photo courtesy NASW
Tuesday, March 10, 2015
Monday, January 12, 2015
by Allie Shukraft, LCSWA, MSW, MAT
This
morning was like many on the weekends. I
got up before the rest of the humans in the house, fed the dogs and let them
out while I tooled around in the kitchen. The room was, I'll be honest, a
typical after-holiday mess, so it took me a few minutes to notice the small
package that had come unannounced in the mail the day before. It was addressed to me, like so many boxes
had been in the weeks leading up to Christmas, but unlike those other boxes, I
had no recollection of ordering this one.
I opened the package, eager to see what I had forgotten that I had
ordered only to find a gift-wrapped package that had been totally
unexpected. What was inside was
inspiration, something that got me up and typing even before making coffee -- a
copy of Austin Kleon's Show Your Work! 10 Ways to Share Your Creativity and Get Discovered.
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
Photo Credit: Christian Sinclair for Pallimed, from the book Show Your Work by Austin Kleon
Monday, January 12, 2015
Monday, December 29, 2014
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 their wish lists for additional research to support their respective social work practices.
This article is the second article in a series of planned joint conversations into these populations. (See post #1 here)
Allie: Although there is some great writing out there in the field of hospice and palliative care (HPC) social work (The Journal of Social Work in Palliative and End of Life Care, for example), there are still large gaps that exist in the HPC social work literature. First off, there is very little in the way of research on measurable outcomes in psychosocial palliative and hospice care specifically. There is research into this work with specific illnesses (i.e. cancer), or in grief work, but there is still a long way to go in proving that what social workers do with their patients has a positive impact.
Along these lines, there is a lack of information about specific interventions or methods that we can use in addressing psychosocial issues in hospice and palliative care. For example, an article might discuss a theory (such as Family Systems) and/or an approach (maybe Cognitive Behavioral Therapy – CBT), but what still needs to be written is what CBT techniques need to be applied and how these apply theory to practice.
In the coming years, I hope to see more written about specific tools that social workers, especially those new to the field, can use in their practices.
Lizzy: I agree wholeheartedly. In school, we talked a lot about bridging research and practice, but I believe the research side needs to help build the bridge a little more. There are many more practical resources and interventions available for bereavement in the research than for the dying process.
I have a wish list of common hospice situations where I would like more ideas for interventions. In these situations basic social work techniques apply, but I would love for someone to tackle the topics directly and offer techniques or tools specifically addressing these challenges.
- Hospice patients with dementia who have an apparent trauma history
- Reluctant caregivers (especially adult children who feel forced into the role)
- When it’s too late for patient to get POA (i.e. patient has dementia) and the natural caregiver is not the legal next of kin
We would be remiss to have an article about the gaps in the literature without acknowledging our favorite pieces.
Allie: My general approach to working with the anticipatory grief and the grief for the losses that our families face through the illness process often ties into the Dual Process Model of Coping with Bereavement (DPM) initially introduced by Margaret Strobe and Henk Schut. Although there are many articles that describe this model, the journal Omega put out a 2010 issue re-examining this model after a decade of publication, including research into effectiveness of interventions that utilize DPM.
The DPM operates on the principle that adaptive coping involves both confronting the reality of a loss, accepting it as it were, and participating in “restoration-oriented” tasks. They noted that those who seemed to have the least mal-adaptive coping strategies seemed to oscillate back and forth between the loss-oriented tasks (such as grief work) and the restoration-oriented tasks of adapting to a new normal. Although the authors point out that this is not a universal way of grieving that all should participate in, what I like about it is that it takes into account that people can be in many different places all at the same time. I also like the idea of creating a new baseline for life that has room for the person (or skill) that is lost. Similar to Dennis Klass and Tony Walter’s idea of Continuing Bonds, the DPM allows room for the who or what that is lost to still be a part of the griever’s life, just in a new way. However, unlike Continuing Bonds, it also allows for space in the griever’s life without the loss.
Lizzy: The research that I use most often in my day to day work is Harvey Chochinov’s research on Dignity Therapy. Not to be confused with the “death with dignity” physician assisted suicide (PAS) movement, Dignity Therapy is a series of interventions designed to relieve existential distress at end of life. Dignity Therapy starts with one basic Patient Dignity Question (PDQ), “What do I need to know about you as a person to give you the best care possible?". I ask that question at every hospice admission I do. This question can help identify patient stressors. Now I must admit, sometimes the patient responses are unexpected. “I like basketball,” for example.
Beyond the initial question, there is a short Patient Dignity Inventory (PDI) that helps to identify twenty different ways that a patient might experience existential distress, from illness related concerns to role preservation. The research provides further exploratory questions such as "What things did you do before you were sick that were most important to you?" that can be asked of the patient and then suggests multiple interventions for each concern.
Hospice and palliative care researchers who want practitioners to apply their research would do well to model the resources that Chochinov’s research provides practitioners.
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 best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW
Monday, December 29, 2014
Sunday, November 30, 2014
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 Developmental Life Cycles is the first 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)
Allie: For children, developmental stages are different than adults, but basic needs are the same. There is a wide range in understanding and experience in pediatrics, and this can impact the tasks and goals that the family chooses to strive for. However, the needs are much the same as those of any age: to be loved, to have understanding, and to be unafraid. Luckily, most children have their parents and siblings, if not a floor full of caring staff-members throughout their palliative course.Lizzy: I agree with the "needs" for any age. I do think that applies to my patients as well. As far as development cycles go, gerontology is a newer area of study than pediatrics. In gerontology, developmental cycles are not as clearly defined as they are with children. You could ask five different experts and get five different answers. We don’t categorize our patients by age because our clients do not use their age to define themselves. My favorite intervention with elders is Dignity Therapy, developed by Harvey Chochinov. The premise is simple: to see patients as they see themselves. Our patients don't see themselves as infirm, they remember when they rode motorcycles or traveled to some foreign country at the drop of a hat. Their approach to their dying is going to be less about their age and more about their general philosophy towards life.
The best thing we can do for our gerontology clients is to get to know them and have them feel that we "know" them as well.
Could you give me some examples of how your approach might differ based on developmental cycle for children?
Allie: Well, children are going to differ greatly in their own view of death. Some of this will be along developmental lines, and some on experiential lines. If the child has already experienced a death, such as a pet or a family member, for example, this loss can color how the child views death and the words that he uses to describe it. At various stages, the concept may be too abstract for them to fully comprehend, or may include magical thinking to explain concepts beyond their understanding. There are some great resources out there for more specific information, such as The Dougy Center, which has a list of stages and understanding. When looking at the child’s own death, there is often a great deal of fear especially if the family won’t talk about it. Here children might express a desire to stay awake out of fear they will die in their sleep, or an unwillingness to be separated from their parents.
The social worker’s role is to try to get everyone in the family talking honestly about death so that the child can express and worries or fears that he may have and the team, particularly the parents, can talk about how to address these issues. One approach for a 9-year-old, for example, might be to try to get him to talk about what death is and why he thinks he is dying. Developmentally he is starting to have a concrete understanding the permanence of death but is likely to have fears about death being something painful or that will involve harm to his body. Talking through what we know will happen and what we hope will happen allows us to combine the medical with the metaphysical and bring in his parents’ (or his own) spirituality and belief systems.
Lizzy: I'm glad you brought up spirituality because a person's spirituality (or non-belief) can definitely be an influential factor on their views of dying. While not directly tied to a developmental stage, my experience has shown that the older the client is, the more likely they are to have a strong religious orientation and/or church affiliation. A belief in heaven does not necessarily mean a greater acceptance of death though. Also, we still need to assess spirituality and not make assumptions, because I have seen 99 year old non-believers too.
When I think about the different generations within gerontology and approach towards death, I would also want to acknowledge that an older age does not guarantee an acceptance of death. The process of dying can still be a scary concept ever for elders who have lived a long life and have a strong "faith."
You mentioned previous experiences with death. I always ask my hospice patients what experience they have had with other people dying, especially looking for firsthand bedside experience. If the patient had been bedside and it was a peaceful moment with their loved one, they may be less afraid. If they have not had experience, then I can share with them my own assurances from my work at the bedside. My role is to provide assurance that we will control symptoms and that a peaceful death is possible.
Allie: When looking at a pediatric death, we are also fortunate on the inpatient side to (typically) have access to certified child life specialists (CCLS) who have education in childhood development, medical play and education, and legacy-building. Using these skills they take the lead in memory-making for the child and family, helping the child to make gifts for his or her family such as hand molds or footprints. Some even write songs as part of their legacy with our music therapist. In this way, although they have less life to review that adult patients, they are still able to leave an indelible mark for their families that keeps their stories going.
Read more posts about social work on Pallimed here.
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. Although she is still learning how to use it, you can find her on Twitter (@alifrumcally).
Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW
Sunday, November 30, 2014
Wednesday, November 5, 2014
In inpatient pediatric palliative care there is one question that often plagues most practitioners: how do we start? Like other practitioners in hospice and palliative care, we want to build a relationship that will include tough questions and uncomfortable topics, but how to get there with children is often a bit intimidating, even to seasoned practitioners. Here is how our team strives to build a relationship:
- First, we introduce ourselves and explain what palliative care is. Our team will usually begin by explaining that we are “an extra layer of support” that works with families dealing with serious illness or conditions. At times, we may even put the patient into context: “we tend to see the sicker children in the hospital like your child”. We share that we are here to help with clear communication, symptom management, and support during any decision-points that may arise.
- Then we talk about our specific roles and how they overlap. “Our physician will be looking after your child’s physical comfort, making sure that pain and symptoms are managed. Our nurse will help with some of that, and can also offer information about what is going on medically. Our social worker will be focusing more on your social and emotional comfort. Are there large worries weighing on you in addition to your child being in the hospital? Each member of the team can help communicate about each of these issues, as our roles somewhat overlap.”
- Next we ask about their experience. As Dr. Justin Baker from St. Jude’s says in his presentations, “how has this experience been for you”? We listen to the story of the diagnosis and illness course and then again, ask about the experience. What has it been like dealing with all of this? This gives them a chance to connect and humanize the patient.
- We ask to look at pictures of the child and the family before this hospitalization. As Dr. Laurie Hicks from Levine Children’s Hospital puts it, “this lets me know what we are working towards”.
- Finally, we try to offer a specific way that we can help the family and/or patient. This can be offering to find financial assistance, making a suggestion about something that other parents have found helpful, or offering to “be the bad guy” with visitors who overstay their welcome. I usually hand parents my card and tell them that, though I am not available 24/7, my voicemail is. If they think of a question or fear that they want to share or they have some worry or anger they need to get off their chest, they can call and leave me a message. Even if they need to express their anger, they can do that there (though no one ever has).
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. Although she is still learning how to use it, you can find her on Twitter (@alifrumcally).
Photo credit: Lynna' Alvarnas, with permission.
Wednesday, November 5, 2014
Friday, October 17, 2014
In discussions with palliative care social workers, there is a sense that we are afforded somewhat unique opportunities in medical social work. Although we work closely with other social workers in the medical setting, we have a different relationship both with patients and families and with other medical teammates. There are many traits that the palliative social worker needs to be able to demonstrate in order to be effective in his or her role. Here are five of those:
1. A learner’s mind. As medical social workers, we are well served if we continue our learning beyond the classroom and into palliative care practice. We need to be able to synthesize medical knowledge and connect it to our social work skills. We also need to be able to translate this “foreign language” into lay-speak. In palliative care, this includes relaying disease course, coaching patients through scary internet searches, and guiding families through uncomfortable conversations, like telling someone that their son might not die for a few days after the breathing tube comes out.
2. Flexibility. We need an ability to learn about various psychosocial interventions and how they can be creatively applied to the palliative care population. We need to know how the mind and body interact and need to flex how we apply this information to patients and families exhibiting signs of stress. We also need to be flexible with the tools in our toolbox. If something isn’t working, we need to be prepared to switch strategies at a moment’s notice.
3. An ability to change masks. We need to be both gentle and direct with our patients and families based on their needs in the moment. This involves building trust in a short amount of time and being honest throughout interactions. Within our organizations, we need to be able to move between the bureaucratic world and the world of medicine, all while keeping our clients’ best interests in mind.
4. Selfishness. We need to be able to attend to our own self-care and create balance in our lives. We are great at coaching and supporting others through their moments of crisis, but we must also attend to ourselves in order to sustain our health and practice what we preach.
5. A voice. It is a given that we need to advocate for our patients and families. However, we also need to speak up for ourselves to prove our worth and value to the team and other practitioners. We need to be leaders in our organizations, not just in social work, and we need to ask for more than just leadership tasks. We all have graduate degrees, and many of us are licensed and hold advanced certification in the field.
If you are a palliative care social worker (or want to become one), how can you cultivate these traits?
• Connect. You do not practice in a vacuum so see what other social workers in the field are doing. Utilize resources such as the Social Worker’s in Hospice and Palliative Care Network (SWHPN) or listservs such as SW-PALL-EOL.
• Reach out. Ask questions of the group or of individuals. Look back in archives to see what has been talked about before and who might be a good contact for you on a specific topic.
• Stay current. Keep up with articles in and around the field. We have a great journal in the Journal of Social Work in End of Life and Palliative Care, but there are other journals out there that are relevant, so expand your parameters.
• Seek supervision. Who else in your community/practice/organization can share their experience with you and help you reflect on your interactions? I think you’ll find that palliative care social workers are a helpful bunch and most of us want to raise the bar on the field, not raise ourselves above it.
If you are looking for a palliative social worker, what are some questions you can ask about these traits?
• How do you stay current in your field?
• What is a creative intervention that you have used or would like to try?
• How do you build trust with your clients?
• What do you do for self-care?
• How will you be a leader on this team?
Another way to ask about these traits might be to present a case example and ask the social worker how he or she might demonstrate these traits with this patient or in this circumstance.
Overall, your questions for the social worker should seek to challenge the social worker to think on his or her toes just as this person would in practice.
In the end, whether you are looking to be the best social worker you can be or find the best social worker you can find, the field of palliative care is one that is filled with creative energy and poised for advances. Palliative social workers are in a position to enhance both the palliative care and social work fields through their key roles on interdisciplinary teams. These traits can serve as a place to start that creative drive and push our skills beyond the basics.
Allie Shukraft, MAT, MSW is a pediatric palliative care social worker in Charlotte, NC where she loves reading and walking with her dogs. Although she is still learning how to use it, you can find her on Twitter (@alifrumcally).
Friday, October 17, 2014
