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by Vickie Leff (@VickieLeff)

Another year, another study proving the value of the palliative care social worker. Edmonds et al (2021) found that when a social worker was involved in a palliative care consultation, whole-person care components were more likely to be addressed, including addressing psychological (82% vs 18%) and spiritual needs (92% vs 8%) and documenting advance directives (90% vs 10%). This adds to what we already knew: involvement of social work impacts quality of care and patient satisfaction (Auerbach, 2007; O’Donnell et al., 2018).

It surprises me that despite much research and team role development, palliative care team members may not be aware of the importance of the palliative care social worker. And yet, as a Hospice Social Worker, in the year of the pandemic, I was considered non-essential. I was not the only one. Around the country, I heard stories of many palliative care and hospice social workers being sent home. Unfortunately, many articles had to be written this year arguing that the social worker is essential (Guerrero 2020; Lipe 2020; Abrams 2020; Gewirtz 2020). Still, so many of us continue to be asked: What does a palliative care social worker do?

If what you know about social workers comes from TV you would think we primarily work for child protective services. If all you know of us is what you see in your ambulatory clinic you might think a social worker is only helpful for ordering a patient oxygen or a rolling walker. These misconceptions are common. After all, the profession of Social Work is represented in many different fields of practice. Our educational training varies and there are many levels and degrees one can have to be called a social worker.

There is a wide range of variation for social work practice in the healthcare setting. Hospitals have social workers as case managers doing discharge planning; some are employed as behavioral health specialists, substance use experts and counselors, and population health managers; some clinical social workers are on Palliative Care teams providing extensive psychosocial care; and some are cognitive behavioral therapy experts in the outpatient setting. Quite a wide gamut. This broad range of practice is both a strength and a challenge for the social work profession because it can make it difficult for others to understand our value.

As March is social work month, let’s spend some time reflecting on the value of social work within the palliative care team. So here is what we do…. (this is not all inclusive!)

Broadly, we provide psychosocial care to patients and families. We are mental health providers who are trained to facilitate family meetings, manage family dynamics, and assess and treat anxiety and depression. We provide counseling to patients, children, and families. We assess for pain, spiritual needs, and advocate for a clear plan of care. We have advance care planning conversations and help to locate resources for patients and families.

We have an expert understanding of the social determinates of health and engage in cultural curiosity, often helping reframe concerns for our team members. For instance, we interpret medical information for the patient and family (think of your patients asking, “What did they just say?”). We coach surgeons prior to a “difficult” conversation, sharing our insight about family dynamics, use of language, and culture to guide them. We listen to the moral distress from bedside nurses in ICU units, offering strategies for well-being. We are often the team member who takes responsibility for team wellness and reflection, helping our colleagues identify their own reactions to difficult cases.

Palliative care social work has come a long way. Like our physician and nursing colleagues, we now have our own evidence-based certification: the APHSW-C. We have a national organization of 1,000 members – the Social Work Hospice and Palliative Network (SWHPN) and over 10 social work fellowships across the country, to train post-masters social workers in specialty level palliative care.

All palliative care team members listen with their own attention, intention, and biases. That is surely the beauty of working as a team, learning and depending on each other to provide the best care. As Rosa, et.al. suggests, we have an opportunity, right now, to become transdisciplinary teams “co-creating a unified framework for delivering palliative care that transcends disciplinary perspectives.” (Rosa et.al., 2020) This transcendent palliative care team requires that we all commit to having a shared understanding of each other’s value. While social work may be a large umbrella, our role in serious illness care is clear and rooted in data. Please stand with us and use your voice to tell others about our value: We are crucial members of the palliative care team and we are essential.

For more Pallimed posts by Vickie Leff, click here.

For more Pallimed posts about social workers, click here.

Vickie Leff, LCSW, APHSW-C is the Executive Director of the Advanced Palliative & Hospice Social Work Certification Program; she is also an Adjunct Instructor at the UNC School of Social Work, Chapel Hill. She still thinks that running a 6 hour marathon is actually a really good finish time.



References

Abrams, L. S., & Dettlaff, A. J. (2020). Voices from the Frontlines: Social Workers Confront the COVID-19 Pandemic. Social work, 65(3), 302–305. https://doi.org/10.1093/sw/swaa030

Auerbach, C. (2007). Evidence that Supports the Value of Social Work in Hospitals. Social Work in Health Care, 44(4), 17–32. https://doi.org/https://doi.org/10.1300/J010v44n04_02

Edmonds, K. et al (2021). An Exploratory Study of Demographics and outcomes for Patients Seen by Specialist Palliative Care Social Work in the Inpatient Setting at an Academic Center. Journal of Pain and Symptom Management.

Gewirtz, R. (2020) As I See It: Social Workers are Essential personnel; So, why aren’t we talking about them? Retrieved from: https://www.telegram.com/news/20200330/as-i-see-it-social-workers-essential-personnel-so-why-arent-we-talking-about-them

Guerrero, L., Avgar, A., Phillips, E., Sterling, M. (2020). They are Essential Workers now, and should continue to be: Social Workers and Home Health Care workers during COVID-19 and Beyond. Journal of Gerontological Social Work. http://doi.org/10/1080/01634372.2020.1779162

Lipe, L. (2020) Social Workers are Essential Workers. Retrieved from: https://www.socialworker.com/feature-articles/practice/social-workers-essential-workers/

O’Donnell, A. E., Schaefer, K. G., Stevenson, L. W., DeVoe, K., Walsh, K., Mehra, M. R., & Desai, A. S. (2018). Social Worker-Aided Palliative Care Intervention in High-risk Patients With Heart Failure (SWAP-HF): A Pilot Randomized Clinical Trial. JAMA Cardiology, 3(6), 516–519. https://doi.org/10.1001/jamacardio.2018.0589

Rosa, W. et al (2020) Coronavirus Disease 2019 as an Opportunity to Move toward Transdisciplinary Palliative Care. Journal of Palliative Medicine, 23(10), pp. 1290–1291.http://doi.org/10.1089/jpm.2020.0306

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by Vickie Leff (@VickieLeff)

As a clinical social worker, I am often approached by my medical colleagues asking for support and a listening ear around difficult cases, understanding their own reactions, team dysfunction, and moral distress. In the middle of this COVID pandemic, Social Workers, Chaplains, Nurses, Physicians, Respiratory Therapists, Child Life Specialists, etc. are all likely experiencing an increase in moral distress. This is due to the necessary change of focus from “patient-centered” to “community -based” approach, and resource allocation issues such as PPE shortage, health inequities, visitation limitations.

A few years ago I wrote another article about Moral Distress. Things have changed since then, compounded by the pandemic. I would like to take a moment to focus on how we can manage these complicated, emotionally charged situations during this incredibly stressful time in which we are challenged about ability, time, strategies to deal with moral distress. Moral Distress challenges clinicians to speak out, work together, and tolerate ambivalence. We must embrace the discomfort in order to legitimize the occurrence and find solutions, especially during this pandemic, when the focus of providers can be easily pulled in many directions. 

“You have to do everything to keep her breathing,” the father of a 15 year old dying of a brain hemorrhage, said to me as the Palliative Care Social Worker. Hearing the panic and desperation in his voice while knowing she would not survive was distressing. Relaying the conversation to the bedside nurse and Resident amplified the distress, as they said what I was thinking: “There is no way she will survive, we have to take her off life support.” Calming myself to be able to have a discussion about the ethics of the situation was challenging, but critical. I worried about whether advocating on behalf of the father would be interpreted as, “the social worker doesn’t get it,” and wondered if they would respect my opinion.

How can we help each other when faced with cases that cause us moral distress? What can our institutions do in response? How can we work as a team to deal with these issues when they arise?

We can remind ourselves that “When addressing moral distress, the aim is not to eradicate the phenomenon but rather to mitigate its negative effects, including preventing caregivers from feeling unable to provide compassionate patient-centered care, feeling withdrawn, unable to return to work or continue in their profession.”

Evidence tells us there are many strategies that can help on the individual, team, and organizational level. It will take deliberate intention, institutional support, and commitment.

Individual Strategies:

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by Lizzy Miles (@LizzyMiles_MSW)

No one should ever be “put” in a nursing home. You might agree with this statement because you don’t like nursing homes, but that is not what I’m saying. The word “put” is offensive when you are describing a person, unless you are talking about putting a 3 year old in the time out corner because he colored on the walls.

I would like to make the argument that no adult wants to be ‘put’ anywhere. You put dishes away, you do not put people away. When we are facing a situation in which the care needs exceed the family member’s ability, there are times where the best option is for the elder to move to a safer environment.

Let’s look at these two scenarios:

Daughter puts mom in a facility because mom is too much of a burden for daughter to take care of at home.

Or

Mom moved to a new community in which there were nurses who could take care of her health care needs. There are chefs who make her meals and caretakers who help her with her activities of daily living. She has opportunities to make new friends, play bingo, listen to music, and arrange flowers. Daughter’s time with mom can be spent sharing memories, watching movies and working on jigsaw puzzles together.

Same scenario. Which one feels better to you?

We do not want to say to our loved one, “You are too much for me.”

What we want to say is, “I want you to have the best care possible and I believe this choice will be better for both of us. I love you and I will continue to spend time with you.”

I should know. I was the daughter. I was an only child in my late twenties when my mom’s sister died. My aunt had lived near my mom and checked in on her daily. My mom was in declining in health and not really doing the best job caring for herself. She wrecked her car and wasn’t eating well. And suddenly I was the one responsible for her and I lived 90 minutes away. I was still working full time and tried to take care of things long distance, but I didn’t feel it was working. There was no end in sight either - though she was declining, she wasn’t terminally ill.  After touring seven facilities, I found one that I liked and brought her to see it. She liked it and moved to an assisted living facility in my city that would be able to care for her until the end of her life.

As it turned out, it was the best decision I could have made. The facility staff welcomed her with open arms and she thrived. She lived there six years and was the happiest I had known her my whole life. During this time my mom and I even became closer than we ever had before.

There is no happy place. Happiness is an attitude.

We’re not supposed to have favorites in hospice care, but a hospice patient who was on service for a couple of years just recently died. I’m really going to miss her. Every time I saw her she was always smiling and expressing gratitude. She was the happiest person I had ever seen in a facility, including my mom. She dressed to the nines with all of her bracelets and necklaces and gushed about the staff, the activities and even the food. As you can imagine, when facility staff were giving tours, they always introduced her to the visitors. This resident also had very attentive staff because she was such a pleasure to be around. Her joy for life was contagious.

Yes, a move to a nursing home is hard, but most patients adjust. In my experience, those who don’t adjust are likely to be unhappy in any setting.  There are residents who don’t leave their room at the facility – but I bet you they never left their house either.

One final story. A patient who had lived at home ended up moving to a facility due to increased care needs. I visited her a week after she had moved and I personally felt sad that she didn’t have pictures or personal items. She, however, looked around the room devoid of belongings and said, “maybe this is how things are supposed to be. Maybe we don’t need a lot of stuff.”  I had no idea she used to be a hoarder. She didn’t know it, but she was embracing the new minimalist trend.

We decorate rooms and put pictures on walls at the nursing home because we are the ones who are still attached to belongings and things. Part of growing older is shedding the past and the stuff. If you ask any resident in a nursing home of what they want most, it is not their china or their figurines and sometimes not even their pictures, but rather to be with those they love. Yes, there are those elders who built their home with their bare hands and they are attached to “place” but most of the time, it ends up not being about the place but the fear of being forgotten. Consider this though: in a facility, elders have much more human interaction and attention to emotional needs than they do at home with a single exhausted caregiver who is at their wits end.


Love and companionship can take place anywhere. 

Hospice personnel can help family members have these conversations. We lead the way by how we frame it. We can talk about anticipated care needs and why moving may be the best option for care. We can share stories about attentive, compassionate care and the activities that the facility has.  We can remind the patients and families that we’ll be there with them too.

Language matters. Words matter.

Let's talk about RESPITE

If you’re talking about a temporary respite with a patient, how do you bring it up?  Is it because the caregiver is exhausted? How would you feel if you were the patient and someone told you that you were “exhausting?”  Imagine hearing, “I need a break from you.” The caregiver needs to be firm with the patient about their needs but they can do it in a way that doesn’t come across in a way that makes someone feel like a burden.

Consider saying something along the lines of “I want you to have the best care possible and right now I don’t feel I am able to do that for you. Please - I would like to take a few days to rest and recharge my batteries. It will only be until x day and then you will be back home again.”

If the respite is for night time relief and the caregiver is planning on visiting during the daytime, say so. “I’ll come visit you so we can catch up on the news/family/whatever.”
When families are in the midst of caregiving, we can sometimes forget about the relationship we used to have with the patient. If we take time to consider the way in which we talk about caregiving needs with the patient in a way that demonstrates the love that we have, we may be able to alleviate some of the sadness or feelings of abandonment.


Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States.
photocredit:
hands Photo by Rod Long on Unsplash
plant photo by Sarah dorweiler on Unsplash
all other photos via author

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by Vickie Leff (@VickieLeff) and Allie Shukraft (@Alifrumcally)

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).

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by Christian Sinclair (@ctsinclair)

The Annual Assembly of AAHPM and HPNA is this week and if you are going to Orlando, or staying home to keep things running smoothly, social media can help make your conference experience be transformative.  Since 2009, the Assembly has been making use of Twitter to provide additional insight, commentary and sources for the multiple sessions each day. Now things are expanding to dedicated conference apps, Facebook and Instagram. And for the third year in a row, the Tweet of the Day (#hpmTOTD) will bring you the highlights of the conference and #hpmBingo will help make sure you do as much as you can while at the Assembly.If you don't know how to use Twitter to your full potential, just keep an eye out for Tweet Pros and don't be shy. If you just want some general tips for attending the Annual Assembly read up on our handy hints for attending a national conference.

The official hashtag of the conference: #hpm19 (works on Twitter, Facebook, Instagram), use it in every tweet this week!

The Pallimed Network will feature content across multiple platforms.

Pallimed Network Accounts

• Twitter (@pallimed) - run by Allie Shukraft, Kristi Newport and Christian Sinclair during the conference
• Facebook - run by Megan Mooney-Sipe and our volunteer team
• Instagram (@pallimedblog) - run by Christian Sinclair
• Website
• Don't forget to read up on #hpmParty which happens every Thrusday night at 9pm of the Annual Assembly each year.
• Vote for your favorite Tweet of the Day by including the hashtag #hpmTOTD. 2017 - 2018

Official Annual Assembly Social Media Links
American Academy of Hospice and Palliative Medicine: 

• Twitter (@AAHPM)
• Facebook
• Facebook Event page
• Instagram (@AAHPM)
• Website
• CONNECT Forum
• Temporarily change your Facebook Profile to have a #hpm19 frame

Hospice and Palliative Nurses Association:

• Twitter (@HPNAinfo)
• Facebook
• Instagram (@HPNA1986)
• Website

Social Work Hospice and Palliative Care Network (Not formally part of the Assembly, but having a conference right after)

• Hashtag #SWHPN19
• Twitter (@SWHPN)
• Facebook
• Facebook Event Page
• Website

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by Lizzy Miles (@lizzymiles_MSW)

As with all my articles, I need to acknowledge that I’m still learning always.  Because of the nature of my job as a float social worker, every patient and family is new to me every day. I have to rely significantly on others’ charting and I have to make sure my own is tip top. For patients who are new to hospice, I make it a special point to learn the nuances of their family dynamic so that I can pass the information on to the care team. There is a fine line between with getting the details and not getting mired down in detail. Ultimately, the key is really paying attention to language.

These days it is common to work with families in which both the patient and spouse are on their second marriage and both have children from previous marriages. Blended families can be beautiful as they can represent a fractured family becoming whole again in a new way. Remember the Brady Bunch? Double the family, double the love.

However, when blended families have conflict at the end of life, it can complicate everything from caregiving to funeral planning.

ON LANGUAGE AND RELATIONSHIPS
For blended families, there are “technical” relationship identifiers and “perceived” relationship identifiers. You may wonder why you would need to clarify the difference, and there are a couple of different reasons.

1.  If there is no designated health care power of attorney (POA), state laws for surrogate decision-making focus on biological relations, and by default step-family are further down the line or even excluded. Even if there is POA, many funeral homes often depend on next-of-kin hierarchy.

2.  The step-relationship may come in to play in regards to caregiving support these family members choose to offer.

Intervention: Be cautious when referencing a relationship as it was previously identified in charting. Other clinicians don’t always make the distinction.

The clinician may have charted “Dad” when the family member is actually “stepdad.” Alternatively, the clinician may have charted “step-sister” without acknowledging the family uses the “sister” label.

I had one daughter who referred to both her dad and her stepdad as “dad.”  No other clinician understood that the primary caregiver “dad” was technically a stepdad.

Perception of “step” may vary within a family. Sometimes feelings about relationships are not mutual.

The age of the sibling might affect their use of the label. I’ve seen older children from the first marriage identify younger step-siblings with the “step” label, while younger children only ever knew and talked about the older ones as “siblings.”

On the subject of grandchildren, a daughter-in-law once “assisted” my conversation with a patient by asking how many grandchildren she had. I never ask the question because numbers challenge the memory. The patient gave a number that only reflected her biological grandchildren which angered the daughter-in-law who had children from a previous marriage. I then was a helpless witness to a 20 minute argument in which the patient was adamant that the step-grandchildren didn’t “count” and the daughter-in-law was visibly upset.

A step-mom may consider her step-children as “children” but if the children are still connected to their biological mom, there is a possibility that the feeling is not mutual.

Intervention: In your own documentation, be clear and distinct with family preferences for labels. 
For example, you could say something like, “The youngest two are technically step-sisters, but family members do not use the “step” identification.”

Be sure to also chart any sensitive areas on the topic, as with the example about the grandmother.

Intervention: Use language the way they do. 
If you’re talking to someone who clearly delineates within the family, reference “step-sister” or better, yet, use the person’s name. If a child thinks of their stepdad as “dad” then use the word “dad.”

ON CAREGIVING AT HOME AND BLENDED FAMILIES
One cannot make assumptions about how a person will be a caregiver based on their familial relationship to the patient. In a best case scenario, we would see the whole family supporting one another and equally sharing the burden. Unfortunately this is not always the case. A few years ago I wrote about how to navigate working with a reluctant caregiver. At the time, though, the dynamics of blended families weren’t completely on my radar.

One blended family challenge is the situation in which a patient is part of a couple that is on their second marriage and patient and caregiver each have children from prior marriages. You could have a combined total of ten children and still no one helping the spouse. The children of the caregiver don’t feel an affinity towards the patient, and the children of the patient do not feel that they need to be the ones to relieve the caregiver. These may seem like stereotypes. They are, and they do not apply to all blended families. This article, however, is addressing situations in which the family system is not working smoothly and is an attempt to explore how we, as professionals, approach these situations.

Alternatively, in some blended family situations, it is one or more of the children who are the primary caregivers and the second spouse is the one who is the reluctant caregiver.
While you want to have an awareness of family dynamics, you do not want to have a position on them. It would be very easy to side with the caregiver who is involved and complaining about others who are not involved. But you don’t know the history of the family and their relationships.

Intervention: First of all, stay out of the mud slinging
Provide supportive listening, but do not take sides. Who is right or wrong is not our place to say.
Don't say, “What a jerk!” Do say, “It sounds like you’re disappointed that he is not more involved in the care.” Document objectively any family dynamics that could affect care.

Intervention: Be solution focused
While we want to provide supportive listening to a family member who is frustrated with a caregiving situation, we also need to redirect focus to the reality of the situation at hand and what we can actually do to ensure the patient is getting good care and the caregiver is supported.

Intervention: Complete HCPOA
If the patient is still oriented and does not yet have a health care power of attorney, encourage them to complete this document. Ask them who they want their primary decision-maker to be. Do not assume it will be their spouse. Be clear with patient and family that without the document, though, the spouse is the primary decision maker in the event patient is no longer able to speak for themselves. When a patient has only been married a few years or less and the children are well into middle age, the spouse’s authority can sometimes be a point of conflict.

Intervention: Have a family meeting focused on goals of care
If family members are involved but disagree on care, encourage everyone to get together at the same time to discuss goals of care. This should be centered on what the patient wants. In an ideal world, the meeting would involve the patient, the whole hospice team and all involved family members. For families providing care at home, at a minimum, the nurse and social worker should both be there. There might be medical questions for the nurse to answer, and social workers have more training in group dynamics and facilitation.

Intervention: Assist with communication and language
Assist the primary caregiver with phrases that he or she can use to ask for help. Sometimes the family can get so caught up in the dynamics of a relationship that they don’t know how to ask for what they need. They may have a habit of accusing someone of not being around enough, but complaining in itself isn’t effective.

I always tell caregivers that it is easier for others to agree to help them if they are specific in their request. I would work with them to find out what their biggest needs are and then help them phrase the “ask.”   I might suggest they say something like, “It would be helpful to have a weekly two hour block of time that I can count on to run errands. I don’t feel comfortable leaving [patient] alone. Is there a time when you might be able to come over to relieve me?”

Advice for you: Help with what you can, let go of the rest
As you are working with challenging families, you may find yourself frustrated by situations that you can’t fix. If this happens and you find yourself having an adverse reaction to a family situation, take a step back to explore your response.

For more articles by Lizzy Miles, click here. For more articles about communication, click here. For more articles about social work, click here.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. She is currently funding her fourth Kickstarter campaign Hora Fugit which seeks to send willing participants gentle postcard reminders of their mortality. You can find her on Twitter @LizzyMiles_MSW.

Photos via Unsplash- Ink by rawpixel; Dad's Keys by Hope House Press; Mugs by Worthy of Elegance

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by Karla Washington (@comokarwash)

I entered graduate social work education in 1998. St. Louis Cardinals first baseman Mark McGwire broke the single-season home run record that year. Hearings were held regarding the impeachment of President Bill Clinton, and Céline Dion released a duet with R. Kelly, forming a collaboration that probably sounds preposterous to most people younger than 25. On the technology front, social media as we know it today was years away (Mark Zuckerberg was only 14). Google itself was less than a year old. Its corporate headquarters were in a garage.

Fast forward to 2018. I used Google to obtain 100% of the facts I presented in the paragraph above; the search engine is now so ubiquitous that the term itself is used as a verb. And just this morning, I read a Twitter update supposedly posted by a celebrity cat. Professionally, in my work as a palliative care researcher, I recently completed a pilot study of a problem-solving intervention delivered entirely via technology, and I’m developing a mHealth (mobile health) tool to support rural family caregivers of hospice patients with cancer.

I asked you to join me in that walk down memory lane to make the following point: Like me, virtually everyone on every healthcare team in every health system everywhere needs continuing education. On my first day of graduate school, Google did not exist. This afternoon, I’ll be reviewing data analytics from a Facebook support group for family caregivers of people with advanced cancer. And unless it’s possible to win the lottery without actually playing, I’ll be working for at least 20 more years. I need periodic tune-ups, and so do your colleagues from all disciplines and professions represented on palliative care teams.

Below I’ve provided a few questions to consider when thinking about the professional development needs of palliative care professionals. Because I’m trained as a social worker, many of the examples I provide are discipline-specific, but the underlying concepts are more broadly applicable. If you’re in a leadership position on your team, I encourage you to give the questions below some thought. If you’re not, feel free to use this list to facilitate a conversation with those who are.

Which individuals on your team have access to professional development opportunities?

I learned long ago that worrying too much about who is getting paid what, who gets credit for what, and who is getting free lunch is a recipe for resentment, burnout, and bad patient care. At the same time, consider the message leaders send when they allocate virtually zero resources for some employees’ professional development while sending their colleagues to week-long conferences in some of the most expensive cities on the planet. There will likely always be inequities in how resources are allocated, but there may be ways that existing resources could be reallocated (or additional resources identified) to improve access to professional development for members of the team who tend to be less tangibly supported in their growth. In graduate school in the 1990’s, I learned that grief occurred in five predictable stages and that stressed out caregivers should punch pillows to relax. We now know that grief is much messier than previously thought, and research has shown that it’s a fairly terrible idea for people to rehearse violence when they are angry or frustrated. I’m sure pharmacists, chaplains, nutritionists, and others would be able to weigh in with examples of how the knowledge that informs their practice has expanded and evolved since their formal education. Patients and families receive better care from well-trained teams. We need to support all team members in access to professional development.

What are the continuing education requirements of the members of your palliative care team? How can you help?

In Missouri, where I work, it’s expensive to get licensed as a clinical social worker. I won’t bore you with the details, but the cost for someone starting out with no financial support from their employer is at least $5,000, which is a very low estimate if they pay out-of-pocket for weekly meetings with a qualified supervisor. That’s a lot. The good news is there are tons of ways to support these new professionals. Is someone on the team already licensed? (Possibly.) Can that person get trained and credentialed to provide supervision as an employment benefit for licensure candidates? (Pretty easily.) Would leadership allow them to receive licensure supervision during regular working hours? (Lots of leaders do.) Can training approved for continuing medical or nursing education also be approved for social work contact hours? (This is probably easier than you think.) The list goes on. I’m sure there are similar lists for other professionals on the team or for social workers in later stages of their careers. Palliative care professionals tend to be great problem solvers. Get them involved in brainstorming low-cost ways to support their acquisition of new knowledge, skills, and credentials.

Can you more meaningfully engage team members in shaping their own professional development?

I love conferences. I go early and/or stay late. I find conferences intellectually stimulating and return from them energized with lots of new ideas. Some people prefer to get their professional development needs met with less face-to-face socialization involved. They might prefer online trainings or access to books or journals. There are sometimes valid reasons to nudge team members toward an educational experience others know to be excellent, but often a more effective strategy is to engage team members in crafting their own professional development plan. This very importantly includes planning the logistics of how their plan will be executed. If you attend a conference, there’s a good chance you’ll need to stay in a hotel. Do I have colleagues I’d be happy to share a hotel room with? Sure. Bodies do weird things in the middle of the night, and we all look different when we first wake up, but I can name a dozen people I’d be willing to navigate that with. Is that true of everyone? Absolutely not. And the list of colleagues I’d even consider sharing a bed with is in the low single digits. I’m guessing most people would just pass on that entirely. We can’t always know what people will want, and we should avoid making blanket policies when it’s not necessary to do so. It’s probably an all-around better idea to just be transparent about available resources and let people make decisions like the professionals they are. And if they have to miss work for a professional growth opportunity – no matter how terrible it actually was while they were gone – they should not have to endure a guilt trip upon their return.

If our friend Google can be trusted, someone named Harvey S. Firestone once wrote, “The growth and development of people is the highest calling of leadership.” Even if that’s not a real person, that’s still a great quote. I am fully convinced that professional development is a vital ingredient in high-quality palliative care, and I’m so grateful to get to be a part of this vibrant, innovative, and growth-minded community. To thank you for reading this post to the very end, I looked up Harvey S. Firestone. He founded the Firestone Tire and Rubber Company in 1900. He is also the author of Men and Rubber: The Story of Business, which I hope we can all agree is a horrible name for a book, even if it is focused on professional growth.

Karla Washington, PhD, LCSW is an Assistant Professor of Family and Community Medicine at the University of Missouri where she researches interventions to support patients and families receiving hospice and palliative care. When not working or spending time with family and friends, Karla enjoys several British television shows including The IT Crowd (her all-time favorite) and, more recently, The Great British Baking Show (or, as they refer to it across the pond, The Great British Bake Off).

Photo composite created by Christian Sinclair and includes photos from Jonas Jacobsson and Tyler Callahan on Unsplash

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by Lizzy Miles

If you had told me there was a parallel between the study of ninjutsu and hospice a year ago, I wouldn’t have believed you. But I have now realized that there is much to be learned from the ninja philosophy that can be applied to hospice.

It was a patient who helped me make the connection.

The chaplain and I were doing our initial assessment with a cancer patient who was younger than both of us.  I will call the patient “John.” I started the visit like I usually do, by asking the dignity question.

“What do I need to know about you as a person to give you the best care possible?”

His response was calm.  “I learned in the military, you can gain a lot of strength through suffering. It can help you see through to the other side.”

I looked over at the chaplain, intrigued. I could tell he was intrigued too.

I asked John if he had any worries or concerns. He said it he didn’t. I had heard that one sister was having a particularly tough time, so I asked John if there was anyone in his family that he worried about.  Again, in a slow, calm voice, he said, “I hope when I’m gone nothing changes, but a shift in the system can cause disarray.”

I suppose my feelings of surprise were because his manner and presence were so much calmer than patients usually are when they’ve been referred to hospice with a short prognosis. I looked over at the chaplain again and we locked eyes. Craig, our chaplain, has a PhD in Philosophy. I could tell that he was also curious and impressed with John’s demeanor.

I turned to John and told the patient as much. “The chaplain and I are looking at each other because you are a lot calmer and more at peace than most patients we meet. What’s your secret?”

John told us that he had studied ninjutsu.

Though I only met John that one time, his strong presence at that visit affected me. I was so curious about ninjutsu because I really knew nothing about it except what I had seen in movies and television, which couldn’t be more misleading. I searched online, and found an article that introduced me to the spiritual component of ninjutsu training. I then checked out several books from the library and dug in.

According to Dr. Masaaki Hatsumi, the last surviving grandmaster of the ancient art on ninjutsu, there are multiple theories of the evolution and origin of ninjutsu. Going back almost 1,000 years there was a time in Japan where feudal lords ruled through terror. Ninjutsu was created as a martial art focused on self defense against oppressors. Along with the physical training, there was a focus development of mental fortitude (Hatsumi, 1988 p. 19-21).

First and foremost: “The ninja are not members of a circus. Nor are the ninja robbers, assassins or betrayers. The ninja are none other than persons of perseverance or endurance.” (Hatsumi, 1988 p. 77)

Secondly, “…true ninjas began to realize that they should be enlightened on the laws of humanity. They tried to avoid unreasonable conflicts or fighting…The first priority to the ninja was to win without fighting, and that remains the way.” (Hatsumi, 1988 p.23)

What was of greatest interest to me in the books was the details of mental training that went along with the physical training in ninjutsu. Much of what we see in hospice goes beyond the physical as well, and I saw many parallels.

Here are the gems I found:

Ninja philosophy: “The objectives of the ninjas are: first, to use ninjutsu to infiltrate the enemy’s camp and observe the situation.” (Hatsumi, 1988 p. 111).
How it applies to hospice: Everyone involved in a hospice situation, including the patient, their loved ones, and the staff, are observing everyone else.
* The patient often can be stuck in a role of observation whether they chose to or not because they may be too tired to interact, or the family will talk in front of them to staff.
* The family is often on high alert, watching the patient for symptoms or watching the staff and timing our responses.
* The staff members are observing the patient for signs of pain or distress and watching family for signs of psychosocial distress.
Interventions: Be deliberate on the task of observation. Imagine taking the bird's eye view. Sometimes we can be so focused on what we need to do or say that we forget to check in. Make a mental note for yourself to observe before you speak or act.

Ninja philosophy: “In ninjutsu this is no fixed or permanent, ‘this is what it is’. Forget the falsehood of fixed things.” (Hatsumi, 2014, p.46)
How it applies to hospice: This is already my favorite insight with hospice. The longer I’ve been doing hospice, the more I keep learning what I don’t know. I’ve written about assumptions that we have about dying, how the dying may not want to be in control, and the emotions the dying might be feeling. Still, I keep discovering more and more variations in the way that people die – both in timing and symptoms.
Interventions: Be mindful of any time you find yourself feeling certain about a patient’s condition or what will happen. Reflect on the times you have been wrong about what you thought you knew.

Ninja philosophy: “First, forget your sadness, anger, grudges, and hatred. Let them pass like smoke caught in a breeze” (Hatsumi, 1988 p. 123).
How it applies to hospice: It is not uncommon for patients to go through a life review process in which they may have feelings of anger, guilt, or shame. Sometimes they take out their emotions out on us. Friends and family too may have memories of past hurts that come up during this time. Hospice staff are sometimes put in the position where we have to wear a mask to hide whatever might be happening to us outside of work.
Interventions: Work on your awareness of when your feathers are getting ruffled by a patient. Recognize that their attitude towards you may reflect on their own internal state of mind rather than a defect of your own. Be mindful of your reactions to stressful situations.

Ninja philosophy: “We say in Japanese that a presentiment is ‘a message conveyed by an insect.’ For example, when someone is dying, his family or close friends he really loved, can feel something is happening. We say than an insect has conveyed a message to them. It makes us believe that one can communicate through the subconscious” (Hatsumi, 1988 p. 72).
How it applies to hospice: If you have been working in hospice long enough, you have to acknowledge there are unusual coincidences, synchronicities, signs, and moments of instinct. There are stories where patients have predicted the timing of their own death, stories about someone dying just when a loved one arrived or left, and stories about spirit presences in the room.
Interventions: Be open to the idea that there are forces beyond what we understand. Remember that patients and families may have belief systems different from our own.

Ninja philosophy: “The first important aspect of ninjutsu is to maintain calmness in the body, and endurance in the heart” (Hatsumi, 2014 p.169).
How it applies to hospice: The connection with this one to hospice seems obvious to me. How many patients do we have with anxiety? From my experience, this feels like one of the most common symptoms across diagnoses, and understandably so. The mind/body connection is most apparent with COPD patients who are short of breath and then feel anxiety about being short of breath and then become even more breathless. We know that they are creating their own cycle, but sometimes we have difficulty helping them find their calm.
Interventions: Start the conversation with patients about anxiety at a time when they are not anxious. Ask them how they calm themselves when they are feeling anxious. If they don’t know how to answer that question, then encourage them to think on it for a while. I sometimes joke with patients that I am giving them “homework.” This goes for staff too. Do you know what brings you calm? How can we be educators if we don’t practice what we preach?

Ninja philosophy:  “Nothing is so uncertain as one’s own common sense or knowledge. Regardless of one’s fragile knowledge one must singlemindedly devote oneself to training, especially in times of doubt. It is of utmost importance to immerse and enjoy oneself in the world of nothingness” (Hatsumi, 1988 p. 65-66).
How it applies to hospice: Patients and families do not get to a point of acceptance of death overnight. For patients and families to reach acceptance they need to sit with the uncomfortable feelings. Slowly, they get used to the idea that this is really happening. When patients start sleeping for longer periods of time, both the patient and the family are learning to separate from one another.
Interventions: Be patient with the time it takes for our patients and families to come to acceptance. Realize that for some of them, the introduction of hospice may have been the first time they truly contemplated mortality. They haven’t trained for it like we have. Those who work in hospice and see death and dying on a regular basis can forget what it feels like to be in this situation.

Ninja philosophy: “Ultimately the responsibility for your training is your own” (Hoban, 1988, p. 172).
How it applies to hospice: Remember not to project your own ‘right way to die’ onto a patient. Consider this: some people actually do want to die in a hospital setting! Some patients do want a room full of people there with them. Some people want the television on to Fox news.
Interventions: Ask the patient about their preferences, rather than assuming you know what they want because it’s what you would want. Self-reflect on suggestions you make to patients and families to ensure you're not projecting your own belief system.

References
Hoban, J. (1988). Ninpo: Living and thinking as a warrior. Chicago: Contemporary Books.
Hatsumi, M. (1988). Essence of ninjutsu: The nine traditions. Chicago: Contemporary Books.
Hatsumi, M. (2014). The complete ninja: The secret world revealed. New York, NY: Kodansha USA.

Photos via Unsplash. Some photos have been cropped.
Moon via Clayton Caldwell 
Owl via Philip Brown
Butterfly via Nathan Dumlao
Smoke via Alessio Soggetti 

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. 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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by Lizzy Miles

It has been four years since I first wrote the article “We Don’t Know Death: 7 Assumptions We Make about the Dying” for Pallimed. You would think that with four more years of experience I would feel more confident in my knowledge about my job and my patients. I don’t.

In fact, I’m still uncovering assumptions that I make when working with patients who are dying.

Recently, I discovered Assumption #8: Dying patients want to be in control.

I had so many reasons and examples to believe this, from the very beginning of my hospice work. I came to this conclusion after just a short time volunteering. One of the hospice patients I visited would have me adjust the height of her socks continuously for ten to fifteen minutes. At first I didn’t understand and I thought to myself that she must be a little obsessive. Then I had this a-ha moment.

She can’t control the big things, so she wants to control the little things.

This assumption held up for a while. I would have frustrated caregivers who would tell me that their dying loved one was impossible and demanding over little stuff: the lights in the room, the arrangement of the drapes. These caregivers would be exasperated. I would validate their feelings of frustration, but also encourage them to empathize. I’d tell them that it’s tough to be dying. The dying need to control what they can. Often this worked to provide some relief to the caregiver, if only briefly.

Slowly, though, my solid belief in the dying person’s desire for control began to unravel. True, there are some patients who still very much want to be in control…but not everybody.

Everything came to a head when I met “John.” I asked him the dignity question, like I always do. He scowled at me.

“How dare you ask me such a deep question. How am I supposed to answer that?” His was one of the most difficult assessments I had to make because he didn’t like questions. He told me his wife asked too many questions. He told me he wasn’t doing well, but “there’s no point to talk about it.”

Later that day, his wife (I’ll call her “Sally”) came into the inpatient unit, and I returned to the room to meet her.  We sat on the couch across the room while John was finishing a visit with a Pastor. Sally talked about how sweet John used to be. She said lately though he had been taking his anger out on her. We had moved to his bedside when Sally said to me, “All I ask is whether he wants bacon or sausage and he yells at me.”

At this point, John rolled his eyes.

I looked at him, and then after reviewing our first interaction in my head, it dawned on me. He is overwhelmed. Unlike other patients who want to control every little thing, John was irritated by the decisions he had to make. I turned to Sally and said, “I know you are trying to please him and give him what he wants, but right now, he has the weight of the world on his shoulders. The act of deciding whether he wants bacon or sausage is so insignificant to him right now.”

I looked over and John was nodding vigorously. Sally was listening intently. “But what do I do? I want to make things easier for him.”

Side note: Surprisingly, we can learn things from television medical dramas. I had been watching The Good Doctor and there had recently been an episode about how a doctor with Asperger’s was irritated with being asked questions. Another doctor realized that giving him statements, rather than questions, are better.

So I suggested to Sally. “Don’t ask him whether he wants bacon or sausage. You pick what you’re making and tell him, ‘I’m going to make you bacon and eggs.’ If he doesn’t want that, he will let you know.

John nodded vigorously again and said emphatically, “Oh yeah I would.” Both were smiling. We were then able to move on to life review and by the end of the visit, the grumpy patient was calling me “Darling.”

So how do you navigate learning and understanding patient preferences to have control or give up control? They aren’t always able to tell you but it's not hard to figure out if you're looking for it. Generally, I would say to start with the premise (okay yes, assumption) that they do want to feel in control.

For the patient who wants control:

• Frequently reinforce that they are in charge.
• If the family tries to take over conversation, always look to the patient until the patient verbally defers. (One exception is if there is a cultural component that an established family point person represents the patient).
• Ask permission before you sit.
• Ask permission to visit.
• Don’t assume they want the television or the lights on/off. Ask.

For the patient who is tired of decisions:

• Consider how you might get information by making statements instead of asking questions. Say: “I wondered how you were doing today.” If you raise your voice at the end of the statement, it’s still a question. Try saying the statement and then sitting with the silence. A non-answer might be an answer in itself.
• If you get more than one “I don’t care” as an answer to a question of choice, be mindful of decision fatigue. Tell the patient what you’re going to do and leave space for them to state a preference.
• Listen for cues from the family indicating that they’re having newfound interpersonal communication issues and provide education when appropriate.
• Know that when patients express untruths ("lies") it might be a sign of question fatigue.



Photo credit: bacon by Andrew Ridley on Unsplash
Photo credit: trees by Evan Dennis on Unsplash
Photo credit: breakfast by Karolina Szczur on Unsplash


Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW