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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 Lizzy Miles (@LizzyMiles_MSW)

Lately I’ve been thinking a lot about the perception of time and how it affects our patients. Because their time is limited, their perception of time and its value can often be magnified. This is our job, but this is the patient’s LIFE. We have to remember that for our patients, they may be hyper-focused on time. How do we help them feel good about timing and the time we spend with them? We can do this by being mindful of how we use our time with them and also how we show respect for their time.

Set expectations
There is research in the ambulatory care arena that says that patient satisfaction is increased if a patient knows how long they are going to have to wait to see the practitioner. It would be reasonable to conclude that this would apply to hospice visits as well.

Intervention: Always give a time range for when you’re going to visit so you bake time in for traffic, other longer visits, etc.

So much caregiver distress could be alleviated if we just set expectations appropriately.

Interventions:
• On admission, make sure you tell patients and families the visit frequency for each discipline.

• Inform family members how your organization’s paging system works. Encourage them to let us know when they call how important their call is. Encourage them to call back if they haven’t heard back from the staff member and they feel it’s urgent.

• If you’re taking a message for another staff member, don’t make promises for others. If you know there is a potential for delay in the other staff member calling them, let the patient know.

Coordinate with all team members to address patient/caregiver crises in a timely manner
Our perception of a reasonable response time for telephone calls or visit likely differs significantly from what a patient or caregiver feels they need. We may think two or three hours is a reasonable response time to visit when a caregiver calls about a new symptom that is causing panic. The caregiver may want us there ASAP. When we can’t get there quick enough, what happens? They call the squad. Emergency room visits for normal hospice symptoms are excessive, unnecessary and can be avoided with coordination.

Sometimes, the staff member who is initially requested may be caught up with something else, and another team member may have to temporarily assist.

Here are some options to consider as well:

Intervention: Can another staff member return the call to find out what is going on?

A social worker may be able to talk to the family member and learn that the caregiver simply wants to order equipment or supplies. Even if the need is for nursing, a call from a social worker to find out what’s going on can be helpful. The need may be for a question to be answered that social work can coordinate with the primary nurse or triage. If a nursing visit is needed, the social worker can inform the family the estimated time that the nurse will be coming out. Sometimes an estimate in itself all the reassurance the family needs.

Is it a matter of the caregiver just not knowing what medicine to administer and education can be provided on the phone by a triage nurse if primary nurse is unavailable?

There is nothing worse for families to not receive a call back when their question was a simple one that could be answered with instructions and education.

Is the social worker or chaplain available for a visit? Sometimes the family wants a ‘body’ from hospice and are comforted by the present of a social worker or chaplain.

Even with patients who are actively dying, I’ve found that as a social worker there is a lot we can do at the bedside to help the family. I’ve gone out to homes in advance of the nurse only to find that family just needed to know that the symptoms are normal and reassurances that they are doing everything right. There have been times where the family has said after my social work visit that they don’t need a nurse visit anymore. To be clear, I’m not in any way doing nursing work when I’m there. What I can do is assess if patient looks comfortable and there are no signs of distress or discomfort. Sometimes just hearing an outside person’s reassurances is all a caregiver needs in that moment.

Is there another nurse on the team who has a lighter load who can visit?

A good hospice organization will have a culture where staff members help each other out.

Intervention: Lead by example with your team members and provide support if another team member is “in the weeds.”

When what you give is never enough

I have to acknowledge there are patients and caregivers who do seem “needy” with time and sometimes their needs are beyond the scope of the work that we do. Patients with COPD in particular can be highly anxious and can have emotional needs. For these patients, we do need to also set time boundaries.

Intervention: Set expectations by telling a patient at the beginning of the visit how much time you have.

There are visits where you do have a limited amount of time due to another scheduled appointment. It’s best to acknowledge this for the patient or caregiver up front so that they don’t perceive that you are bored or impatient with the visit if you frequently look at your watch or the clock.

It may be helpful to know that there is patient satisfaction research that indicates that patients perceive that a provider spent more time with them if they sat down. Do you use a chair or stool in your visits?

If needs are emotional, be sure to be engaging the entire team in coordinating visits so they are spread out across the days. Utilize your volunteers to provide extra support to emotional patients and remember that telephone calls can be an intervention as well.

Show that we value the patient’s limited time

“If I’m here and you’re here, doesn’t that make it our time?” – Jeff Spicoli

Patients who are on hospice have limited energy. Caregivers can be overwhelmed and exhausted. If they’re not up for a visit, we shouldn’t force it because we need to check a box that we did our visit. There are nuances between someone declining a visit because they don’t want to bother you and declining a visit because they don’t need or want it.

Interventions:

• Psychosocial support staff should always ask for permission to visit with patient, whether they are in a facility or in a home.

• Always ask for permission to visit with caregiver. If a caregiver says it’s not a good time because they have a hair appointment, celebrate that they are doing self-care.
Also, patients or caregivers may want a visit to end before they tell you. Always assess nonverbal behavior to see if they’re talking because they want to or if they are just being polite.

Sometimes patients or caregivers say no to a visit because we are vague with the request. They may be more open to us visiting if we clarify how much time we plan to spend and the purpose for our visit. The more information they have with the inquiry, the more likely they are open to meeting with us.

Here are some of my favorite quotes on time:

Better three hours too soon, than one minute too late.
William Shakespeare

A man who dares to waste one hour of life has not discovered the value of life.
Charles Darwin

All that really belongs to us is time; even he who has nothing else has that.
Baltasar Gracian

The bad news is time flies. The good news is you’re the pilot.
Michael Altshuler

If not now, when?

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. You can find her on Twitter @LizzyMiles_MSW.

Photo credits: 
Cover image uses photo from Jon Tyson via Unsplash
watch via Wil Stewart on Unsplash

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by Michael Pottash (@mpottash)

Comfort Care, whatever does that mean? This is the important question asked by my colleagues Anne Kelemen and Hunter Groninger in the September 2018 issue of JAMA Internal Medicine. The term is ubiquitous and its interpretation influences how patients with end stage illness are cared for at the end of their lives. In their article they argue that the language of Comfort Care is confusing and easily misunderstood. They suggest improving the understanding around end of life care and moving to a less ambiguous term for care of the dying. I worry that any term to describe dying care will always be problematic.

So what is Comfort Care? One common definition comes from Blinderman and Billings, writing in the New England Journal of Medicine, defining it as “the most basic palliative care interventions that provide immediate relief of symptoms in a patient who is very close to death.” Another is from the National Institute on Aging, describing Comfort Care as “care that helps or soothes a person who is dying ... to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person’s wishes.” Both definitions are simple enough, and yet lack any specifics or direction for clinicians. This leaves the practice of Comfort Care up for interpretation.

Kelemen points out the pitfalls in operationalizing this vague term. First, it promotes a dangerous misconception that clinical care is binary and that patients must choose between focusing on comfort or not. Second, Kelemen cites a study demonstrating that while the term is ubiquitous, clinicians don’t actually know what it means. This leads to ambiguity around what kinds of medical interventions constitute Comfort Care and to a wide disparity in which medical interventions clinicians apply under the circumstance. Worse, some seem to think that it means methodically titrating up an opioid infusion: “Nearly half [of surveyed physicians] expressed a belief that Comfort Measures Only care is itself an indication for more aggressive opioid administration than for other patients, regardless of clinical condition. This is of concern because it seems to obviate the critical need for nuanced assessment that drives symptom management.” Administration of inappropriately high dose opioids will hasten death; this is at best bad medicine and at worst euthanasia.

Blinderman agrees:

“However, the term is often used in a misleading or imprecise manner — for example, when such care is automatically considered equivalent to a do-not-resuscitate order and, perhaps even without discussion with the patient, is extrapolated to mean the exclusion of a full range of palliative measures appropriate for a dying patient. Rather than simply writing orders for “comfort care” (or “intensive comfort measures,” the term that we prefer), the medical team should review the entire plan of care and enter explicit orders to promote comfort and prevent unnecessary interventions.”

A Pallimed post by Drew Rosielle from 2016 made a similar protest:

“One, it amplifies the already irksome and unnecessary dichotomy we have set up in medicine between 'cure' and 'comfort’... What we are trying to do in palliative care is to reduce the gap between the two, to help our patients feel better as they live longer… Two, it's confusing for patients and should never be said in front of them. I've seen it lead to stupid miscommunication many times. Like someone asking a patient 'Do you want comfort care?' 'Do you want us to focus on keeping you comfortable?' and the patient saying 'Yes of course' not realizing that the clinician was actually saying 'Should we stop efforts to prolong your life and *only* provide ongoing interventions to alleviate symptoms/provide comfort?'”

To summarize: Comfort Care is confusing to patients and families, no one knows how to provide it, and it can be harmful.

Here is the kicker from Kelemen:

“End-of-life care plans must be specific to the patient and family, reflecting their values and goals for that critical event and universal experience. To highlight this, we coach colleagues and families to consider every therapeutic intervention—for example, each medication, laboratory test, imaging study—and evaluate whether that intervention promotes the goal of alleviating symptom burden during the dying process. If it does (eg, oxygen administration in hypoxia), we continue it; if not (eg, the ubiquitous statin therapy), then perhaps it could be discontinued after reassuring communication with patients and families.”

Let’s treat dying patients as we would treat any patients: as thinking clinicians. Continue treatments that meet the goals of the patient and family, and discontinue treatments that do not. If the goals of the patient and family are to prioritize symptom management over life prolongation then ask the question of every test, intervention, or medication: Does this promote quality of life? Some life-prolonging interventions can be continued without impacting quality, if the patient so chooses. This will all depend on the patient’s preferences and the clinical context. That is why it is impossible to create a Comfort Care algorithm, bundle, or pathway - clinical reasoning is still required.

While my colleagues believe that we should use clearer language or work towards a unified understanding of Comfort Care, I would argue that we should get rid of it altogether. Do we need a term for taking care of dying patients in the hospital? If it does not indicate a clinical pathway or answer an urgent clinical question, then what is its benefit? Rather, in my experience, I have only seen it cause confusion, miscommunication, and unethical medical practice. Kelemen has identified a crucial blind spot in our collective medical practice, one that I fear is a symptom of a general misunderstanding and discomfort with how to care for the dying. Let’s teach our trainees to continue reasoning through clinical decisions to the end of a patient’s life, and to provide good medical care even if all that entails is sitting at the bedside to hold their patient’s hand.

Disclosure: Anne Kelemen and Hunter Groninger are dear friends and colleagues.

Michael Pottash MD MPH is a Palliative Medicine Physician at MedStar Washington Hospital Center and Assistant Professor of Medicine at Georgetown University School of Medicine. He is currently very curious to know who will end up sitting on the Iron Throne.

References

1 Kelemen AM, Groninger H. Ambiguity in End-of-Life Care Terminology - What Do We Mean by Comfort Care? JAMA Internal Medicine. 2018

2 Blinderman CD, Billings JA. Comfort Care for Patients Dying in the Hospital. New England Journal of Medicine. 2015.

3 National Institute on Aging. Providing Comfort at the End of Life. Accessed 2018. 4 Zanartu C, Matti-Orozco BM. Comfort Measures Only: Agreeing on a Common Definition Through a Survey. Am J Hospice and Palliative Care. 2013

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by Drew Rosielle (@drosielle)

Annals of Internal Medicine has just published one of the better trials of compounded analgesic creams I've yet to see, and unfortunately it's pretty damning.

It's a randomized, double-blind, placebo-vehicle controlled, intention-to-treat, 3 parallel armed study of 3 different compounded creams for adult patients (median age ~50 years, ~50% women) with localized chronic pain (the 3 groups had neuropathic, nociceptive, or mixed pain syndromes). It took place at Walter Reed. Each arm had about 130 subjects (which, for this type of research, and compared to many other investigations of compounded creams, is quite a lot). Patients needed to have chronic pain (longer than 6 weeks), rated at least 4/10, and localized to a body area or two extremities. Broadly speaking about half the subjects' pain was incited by an injury or surgery. Pain was classified as nociceptive vs neuropathic vs mixed based on a pain physician's assessment, more or less. About 20% of patients were on systemic opioids.

Subjects were prescribed one of 3 compounded creams (or the placebo/vehicle cream which was PLO) and asked to apply it to their painful region three times a day:

• Neuropathic: 10% ketamine, 6% gabapentin, 0.2% clonidine, and 2% lidocaine
• Nociceptive: 10% ketoprofen, 2% baclofen, 2% cyclobenzaprine, and 2% lidocaine
• Mixed: 10% ketamine, 6% gabapentin, 3% diclofenac, 2% baclofen, 2% cyclobenzaprine, 2% lidocaine

The primary outcome was average pain score after 1 month of treatment. They presented several prespecified secondary outcomes too. The study had 90% power to detect a pain reduction of 1.2 (out of 10) points with 60 patients per treatment arm, which they met.

Basically there weren't any statistically, let alone clinically, meaningful differences between the groups, regardless of pain type. For all groups, pain was reduced at a month by around 1-1.4/10 points on the 0-10 NRS, regardless of receiving active drug or placebo cream. Secondary outcomes including patient judgement of a positive outcome (ie, the percent of patients who reported they considered the cream a success) were the same between all the groups too (around 20%). Health related quality of life did not differ either between groups at a month.



This study is one of the largest and best-designed study I'm aware of of these creams, and the findings are pretty clear: such creams benefit patients via placebo mechanisms, aka they don't work.

Note that there is a separate body of research on some other topicals which should not be confused with this study. Eg, the 5% lidocaine patch for post-herpetic neuralgia, topical capsaicin for a variety of neuropathies, and at least some topical NSAIDs for osteoarthritis, and topical opioids. I'm not broadly endorsing those either - it's complicated - however they weren't tested here and the take home point is we should stop making our patients pay exorbitant out of pocket costs for these compounded analgesic placebos, not necessarily those others.

Particularly for painful axonal neuropathies, many of us struggle with how to control those adequately, especially chemotherapy induced ones which don't respond well to most systemic drugs, and I've ordered plenty of fancy creams in the past for my patients, most of whom paid out of pocket for them, and I think it's time to stop doing that.

For more Pallimed posts about journal reviews.
For more Pallimed posts by Drew click here.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle.

References

1 Brutcher RE, Kurihara C, Bicket MC, Moussavian-Yousefi P, Reece DE, Solomon LM, et al. "Compounded Topical Pain Creams to Treat Localized Chronic Pain: A Randomized Controlled Trial." Ann Intern Med. [Epub ahead of print ] doi: 10.7326/M18-2736

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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 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

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by Lizzy Miles

The day before the inaugural Endwell Conference in San Francisco, I had the opportunity to sit down for tea with Ivor Williams. Ivor’s Endwell biography listed in the program is what caught my attention.

Ivor is Senior Design Associate at the Helix Centre, based in St Mary’s Hospital in London; founder of the research and consultancy group Being and Dying; and co-founder of Humane Engineering, designing digital products that explore the use of technology for health and social good.

Ivor’s focus at the Helix Centre is on innovation at end of life. I really didn't know what that meant, but I wanted to learn more from Ivor. In hindsight, I wish I would have audio recorded our conversation because his way of expressing himself is so thoughtful and profound. I even found myself forgetting to take notes or finish my sentences on the notes that I did take.

Fortunately I wrote down my takeaways from our conversation. These are not necessarily direct quotes, but themes and ideas that came through.

Doctors aren’t experts. As a society we have to move away from the idea that medicine provides certainty.
and yet…
In the U.K., a patient cannot demand treatment.

Death is about power and control. I brought up the conditions in the U.S. where it seems to be that there are a wide variety of views and strong opinions related to end of life. There is the advocacy for euthanasia and then a contingent of people who insist you should have the right to pursue treatment, even against doctor recommendations. Ivor reminded me that America was founded by a variety of cultures and therefore it shouldn’t really be a surprise that we have all these varied points of views.

We need to find a way to be compassionate towards those who fear death. This thought hit home for me because sometimes I forget what it’s like to be thinking about death for the first time. As a hospice social worker who hosts Death Cafes in my spare time, I think about death and dying every day. Most of our patients and family members don’t. What does this mean for how I (we) interact with our patients and families? While there is some information that is common sense to us, how do we communicate that information to those we serve? I want to start reminding myself before every interaction to be mindful of my approach.

Innovation doesn't have to be complex. One of Ivor’s cool projects was a redesigned CPR form in the U.K. to require a conversation between physician and patient/family. I imagine this was quite a process to implement. However Ivor gave me a lovely example of how design and innovation can be simple.

Ivor told me about a hospice that had a room in which physicians would take families to deliver what inevitably would be bad news. As per custom in the U.K, tea was served. However, for convenience sake, the tea was served in plastic cups. It was a cleaning person who noticed the symbolism and raised it as a concern.

“Nothing feels more transient, more impermanent than tea in a plastic cup," Ivor noted.

The hospice listened to employee and switched to using a real teacup for the family conversations. Ivor said the impact was noticeable.

Recognition and ritual matter. Ivor gave another example of a seemingly small detail that could feel symbolic. When a patient dies in an inpatient unit and the family isn’t there, how do you package their belongings? Ivor told of a hospice that got really nice fabric bags for the clothing to give the situation the respect that it is due. Certainly it would cost more, but as soon as I heard of this, I felt in my heart that it would make a positive impact for most families.

Take a breath. Ivor said, “Death isn’t a medical experience, it’s a social experience.” Are we acknowledging the impact our patients have on us? Are we taking a moment to acknowledge our own emotions? Rituals aren't just for patients and families - staff members can benefit from ritual.

In his presentation, Ivor emphasized, “Death involves everyone. Design accordingly.” Ivor implored to the audience that it is all of our responsibilities to think about designing for a better end of life, not only as professionals, but also as humans.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and a regular contributor to Pallimed. She is the 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.

Photos:
Title Teacup: Morgan Sessions via Unsplash
Candles Mike Labrum via Unsplash

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by Christian Sinclair (@ctsinclair)

Looking back at 2017, we didn't publish a ton of posts (only 50!*), but we had some that clearly resonated with people and continue to be popular since we keep seeing them show up on social media. Working closely with her, I already knew the great qualities Lizzy Miles brings to Pallimed as a writer and an editor, but looking at the top 10, her experience as a hospice social worker has led to a knack for insightful and practical posts. Her posts also seem to be meaningful to clinicians in multiple settings in addition to patients and families. So here are the top 10 posts of 2017 based on page views:

#10 - Extremis Documentary Falls Short at Oscars, Wins Over Palliative Care by Christian Sinclair

#9 - 14 Ways Hospice Patients Have Said They're Ready to Die by Lizzy Miles

#8 - LGBTQ at the End-of-Life: Needs and Challenges by Vivian Lam

#7 - Lorazepam, Haloperidol and Delirium by Drew Rosielle

#6 - "Going Palliative is Not a Thing by Staci Mandrola

#5 - Facing the Abyss: Planning for Death by Kevin Dieter

#4 - The Emotions of Dying by Lizzy Miles

#3 - Changing Treatment Options in Delirium - No More Antipsychotics? by Drew Rosielle

#2 - Defining Dignity at End of Life: One Question to Ask Hospice Patients by Lizzy Miles

#1 - The Dying Don't Need Your Permission to Let Go by Lizzy Miles

Two important notes of appreciation. One for Lizzy Miles and Vivian Lam who were the key editors in 2017 to help get posts ready for publication. And a big thank you to the 23 writers who contributed to Pallimed in 2017- Lizzy Miles, Drew Rosielle, Kevin Dieter, Vickie Leff, Vivian Lam, Erica Frechman, Paul Moon, Lori Ruder, Arif Kamal, Megan Mooney, Ishwaria Subbiah, Lyle Fettig, Amanda Hinrichs, April Krutka, Jennifer Wilhoit, Paul Carr, Staci Mandrola, Abagail Latimer, Karen Kaplan, Shayna Rich, Meredith MacMartin, Renee Berry and Rick Strang.  Without you, this site would have a much less diverse voice.

If you want to be part of the team in 2018, we are always looking for palliative care and hospice clinicians and advocates who have a passion for the field. We have all sorts of needs and would love to add you to our current team of 17 volunteers. Check out this post to learn more.

Christian Sinclair, MD, FAAHPM is the Editor-In-Chief for Pallimed and a palliative care physician at the University of Kansas Cancer Center. You can find him on Twitter (@ctsinclair).

*for comparison, Pallimed published 297 posts in 2009 (includes the Arts and Cases blogs)!

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by Lizzy Miles

I had forgotten that I had written about my first few days as a hospice volunteer. I just discovered it while I was looking through some old electronic files. Now, ten years later, with more education and a career in hospice, I still notice that some things never change. You would think that I would be more certain about things, but I don't think I am. However, I believe that uncertainty is a necessary part of the job. I've written about how we don't know death. When we are uncertain, that means we are evaluating our behavior and how it's perceived by others. I now believe it's good to be a little bit nervous because it means you care about how you come across.

When I became a volunteer manager, I remembered my uncertainties and wrote about how to address them in a FAQ for volunteers.

This diary is unedited. I display for you my vulnerability full-force. The only editing was of the identifying information.
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Day 1 of my hospice volunteer experience:  Monday, June 11, 2007

Before I went on the visit I ran through so many scenarios in my head. What would I say? What would we talk about?  I thought about it all day with a mixture of dread and anticipation. I am not ready for this. I need to do this.

When I got to the facility, there was a large open area where lots of patients were in a big circle playing bingo. I worried that my patient that I was to be visiting was there and what was I supposed to do. She wasn’t… she was in her room… room 205. The receptionist told me that Annie would like the company.

The door to Annie’s room was propped open with a trash can.  I knocked softly and walked in and at first I didn’t see her and thought she wasn’t there. Then I saw her. She was a tiny little thing laying in the bed with no covers. The television was on, blaring the evening news. Annie was sleeping. I wasn’t sure what I was supposed to do next. Would she wake up startled that a stranger was in her room?

I saw a footstool at the end of the bed and sat on it. Then I realized if she opened her eyes I would be right there staring at her and it might be uncomfortable for both of us. So I moved the footstool to the side of her bed. No that’s too close. I scooted it back so I was within her line of sight but more through peripheral vision. She was moving her hands and tugging on her air tube and mumbling stuff. I couldn’t hear her over the television.

Finally, she opened her eyes and looked at me. I said, “Hi Annie, I’m Elizabeth, a volunteer with hospice.” She then asked me, “Are you here for communion?”  I thought she was asking if I was here to get communion and I said no.

Then she said, “Are you here to give me communion?”

I said no, I was a volunteer. Then she told me that she needed communion. Several times. “I want Holy Communion.  I WANT Holy Communion.  I want to be absolved of my sins.” I was not sure what to do.

I asked, “Do you want me to see if I can find someone to give you communion?”

She said, “Do you think I can go out like this?  Of course not.  How am I going to get communion?”  She was quite distressed.

Thinking that somehow through a streak of bad luck I got a patient who was dying immediately and that I needed to go and find a priest right then, I told Annie I would go see what I could do.  She seemed relieved.

I walked out to the nurse’s station and I had to take a second to compose myself.  “Annie is asking for communion?”  The nurse smiled and nodded and said that Annie had communion that morning.
“And that’s good enough?  I don’t know… I’m not Catholic.”
“Yes – she probably just forgot.”
I went back into Annie’s room and told her.  “Annie!  You got communion this morning!”  She smiled.  “I did?  Oh thank God. I forgot. My memory is not so good.”

Annie’s daughter Karen came in about 15 minutes later and I introduced myself.  She was maybe in her late forties or mid fifties with curly brown hair.  She looked tired.  I wasn’t sure whether to stay or go, so I kind of backed up and leaned against the wall.

When Karen started talking to her mother, I saw an immediate change in Annie.  Her daughter was asking her how she felt and how much she ate and Annie point-blank said, “I don’t feel like talking. You can talk but don’t expect me to answer.” Karen looked at me. I saw the pain and the worry in her eyes.  I felt like I was intruding on a private moment so I said a quick goodbye and left.

As a volunteer we are not to judge or conclude. We are not to comment. You can’t help but think about the situation. The distance, without the pain and grieving, gave me perspective.  From my brief interaction with Annie and her daughter I concluded the daughter wasn’t ready. When I was there, Annie talked a lot. About the deeper things. She doesn’t have time for small talk. She doesn’t care about the food that she had. She just wanted to die and she was worried about it.  Karen, still talking about daily life is in a different place than her mother. She’s not ready for her mother to go. I hope that my presence in visiting Annie will help her talk about what she can’t say with her daughter. My fear is that I don’t know how to respond, but I don’t think that’s as important as allowing Annie to express herself.

Day 2: Wednesday June 13, 2007

Wow.  I just returned from my second visit with Annie.  It was quite a different experience. I should have known the days would be different but I forgot. This time the door was closed. Not sure what I should do, I asked the nurse who told me that I should knock, but that she wouldn’t hear it and then to go right in.

Well this time Annie was sitting on the bed fully clothed. She had her head down and didn’t notice me right away. When she did see me, I think I startled her and she scolded me several times.

She had forgotten who I was but seemed glad to see me. She asked if we could move over to the chair to visit. She said she forgets stuff often and mentioned it would be nice to have a notebook to write things down. I saw a notebook next to her chair and we got it out and it was FILLED was scrawled writing – rants almost. Then we saw another notebook and the top page had “Stop Talking on Paper” written on the top of it.

She asked my name and talked about privacy and how it was important not to use names and not to talk to people. She said I could talk about her if it helped other people but not to use names.

She asked for my first and last name and wrote it down. Then
she asked for the date and wrote that down. Then she asked whom I was with and I said I was a volunteer with hospice and she wrote that down. Then it started to get really weird.

She asked me if we had just met and I said yes and she asked me my name. Then she asked me the date. Then she asked me whom I was with and I said I was a volunteer with hospice. We continued the same conversation for an hour and a half. Every time I said my name she smiled and said it was her name too.

Interspersed in were a few stories that she repeated about being 19 in Cincinnati and having a friend whom she walked home with and somehow she was attacked and hit on the head.

About 8:00 Annie’s daughter Barbara called and I could hear how tired she was. Annie asked me to introduce myself and I did and Barbara thanked me for visiting her mother. She said it was hard to visit after work and I told her I knew. I had been there before.

Annie talked a lot about privacy and secrets. She mentioned her fear of being alone and she worried about people knowing that she didn’t have a memory. She told me that I didn’t have to worry about what I told her because she wouldn’t remember it anyways. Then she told me not to bother telling her anything because she wouldn’t remember it anyways.

When I said goodbye, she asked when I was coming back. I was undecided and afraid to commit.  I said Saturday once and Sunday once but I avoided writing anything on paper. She told me that she was really happy to have me come visit and wanted to give me something. I told her I didn’t need anything. She worried about me getting home and I reassured her that I would get home before dark. She asked if I would call. I told her I couldn’t.

I intended to stay half an hour, I ended up staying an hour and a half. When I got home I found that the Volunteer coordinator had sent me four more patients. I felt drained.  How can I possibly…?

Day 3: Monday June 18, 2007

I negotiated with the hospice volunteer coordinator to only take on one additional patient right now. Tonight was my first night visiting both patients. I had wanted to go on the weekend but I haven’t been feeling great lately and I was really tired for some reason.

I visited Annie first tonight. This time I made sure I knocked loudly. She smiled and invited me in as if she knew me. She knew I was a friendly face but when I asked her if she remembered me, she said no. She seemed mentally more alert but physically more declined. She had some kind of massage pad on her chair and a pad under her butt in case she didn’t make it to the bathroom. We prayed together some. She said we were going to pray for 15 minutes and I got a little nervous because I don’t have 15 minutes worth of prayers but it ended up only being like two minutes. We said the Lord’s prayer together and there were parts where I had to let her lead because I forgot what came next. It’s been a while… Mostly when we were supposed to be praying silently, I would repeat the same thought over and over in my head. Please lord, accept Annie into your kingdom. I thought at the end of the evening that it might be nice for me to look up some actual prayers as I felt that mine were somewhat inadequate.

Annie told me she loved me several times and I know that she was grateful for the company. I guess she has a reputation among the staff as being quite needy so I’m glad that I help in some way. It’s hard to leave her though, but I had promised to visit the other patient.
---
Expecting the other patient to be just like Annie I was surprised to find out that she was in the ‘memory’ ward. You know, the one that requires a code to get in…  I walked in and there was a circle of patients, some sitting, some standing… listening to oldies. I’m not sure who was singing. I walked up to the nurses desk and stood there for several minutes and they finally acknowledged me and said that the nurses were getting Martha ready for bed and that I could wait with the circle. I waited about 10 minutes.

When I first met Martha I was pretty surprised. She was so very pale and fragile and you could barely distinguish her from the sheets. She looked at me but I could tell she couldn’t move her head well and I didn’t know whether to stand or sit and I ended up switching back and forth between standing and sitting. It never occurred to me to plan what to say and after I introduced myself I was at a loss for words. What do you say?

I ended up commenting on her quilt which commemorated a 50 year marriage as of 1999.  There were pictures of them young and older, but even the older picture didn’t look like the frail woman in front of me. It wasn’t long before Martha closed her eyes and went to sleep so I sat there about 20 minutes and tried to pray again and I am a little embarrassed to say, I watched the clock. I vowed to myself to look up some Catholic prayers so I would know what to say.

Whoever thought it would be so hard to talk to God?
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Annie ended up living for several years after her hospice admission. She was discharged and readmitted. She had a big influence on me deciding to switch careers and return to school to become a hospice social worker. I wrote about her in my book of hospice stories. I had to stop volunteering with her because it was a conflict of interest.

Fortunately, her daughter emailed me when Annie was dying and I sat with her. Shortly before Annie died, I wrote in her notebook, "God loves you Annie." She read it and looked up at me and said, "God loves you too, Elizabeth."  My jaw dropped. She said, "That IS your name, isn't it?" With tears in my eyes, I nodded yes. When Annie became unresponsive, I sat with her and put a cold compress on her forehead to cool her fever. I didn't have a rosary, so I used pieces of paper to count out my prayers. After several years with Annie, I had the rosary prayers down pat.