Monday, February 19, 2018

Frequently Asked Questions about Health Care Power of Attorney (HCPOA)

by Lizzy Miles (@LizzyMiles_MSW)

Sometimes when we encourage patients to complete a Health Care Power of Attorney (HCPOA), the patient declines the offer based on mistaken assumptions they have about the document. We never want to push a patient into doing something they don't want to do, however, sometimes their resistance is based on a misunderstanding. In an attempt to help address mistaken beliefs and/or concerns, I created a FAQ for our patients. This also can be used for staff as talking points for the discussion.

I don’t need one, I am my own decision-maker and I always plan to be.
As long as you are able to speak for yourself, you are your own decision-maker. However, as part of the disease process, many hospice patients get to a point where they are unable to express their own wishes. When you designate a HCPOA who understands your point of view, they can step in and tell us what you would want in a situation when you’re not able to tell us.

I want to maintain my independence. I don’t want to give up control.
A HCPOA only has authority to speak when you are no longer able to share your own preferences. As long as you are still able to indicate your wishes, will we ask YOU.

I don’t have anyone I trust to make my health care decisions.
If you don’t have a designated decision-maker, you could end up having someone you don’t want or don’t know making decisions for you if you can’t express your own wishes. If you don’t know of anyone in your friends/family circle that you can designate, you could contact a professional representative such as a lawyer.  Remember, as long as you are able to express your own wishes, we will ask you what you want.

My next of kin (next closest relative) would be my decision-maker. Why do I need a form too?
When you designate a HCPOA, you are creating a written document of whom you want to represent you when you are no longer able to speak for yourself. This extra step can be helpful for other family members to know that you’ve confirmed in writing who you trust to speak for you.

I have a big family. I don’t want to hurt anyone’s feelings.
We rarely see hurt feelings in families as a result of a patient completing this document. In fact, written documentation with this specification of who you choose to be your future decision maker makes decisions easier. Sometimes with big families there can be many different opinions expressed. A written document designates a point person of your choosing to make the final call. Each family is different. If you think it might be helpful, you could tell your family why you chose certain individuals. Ultimately, it is a bigger challenge to family dynamics to NOT have this paperwork.

I may change my mind.
If you are still able to make your own decisions, you can always change the paperwork.

I don’t want to think about this right now.
It’s understandable that the thought of having someone else making decisions on your behalf may be unpleasant. We encourage patients to complete the paperwork now rather than later because it can bring peace of mind. A completed Health Care Power of Attorney will assure you that if/when you are no longer able to speak for yourself that your representative is someone you chose.

I have a document from another state.  Isn’t that good here?
It could be. If you completed a valid legal document in another state to designate your Health Care Power of Attorney, our state's medical professionals might be able to honor it. We need to review it to be sure. We recommend that you share your document with hospice staff to ensure that we understand your choices for decision-makers.

I think I completed a Health Care Power of Attorney before but I don’t have a copy. 
If you don’t know where your document is, then we are unable to honor it. If/when you are not able to make your own decisions, we would need a copy of the written documentation of your chosen decision-maker. This is for your own protection to ensure we are checking in with the right person.

Can’t I just tell you who would be my decision-maker?
You could, but in the event that you have interaction with other medical professionals, they wouldn’t know what you told us. When you put your preferences in writing, it’s a physical document that you can share with whomever is providing care.

We hope you found this FAQ to be helpful. Let us know via Twitter, Facebook or email.
Feel free to use this article in your workplace with the attribution:

 Used with permission from @LizzyMiles_MSW and

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.

Photo credits
Title Photo Thien Dang on Unsplash
Monkeys Park troopers on Unsplash
Shoes Photo by Matheus Bertelli from Pexels

Monday, February 19, 2018 by Lizzy Miles ·

Friday, February 16, 2018

2018 12th Annual Pallimed-GeriPal Party

by Christian Sinclair (@ctsinclair)

Every February the questions start rolling in, "When is the Pallimed-GeriPal party?" Just so you know and can mark it on your calendars from here to eternity, it has a standing reserved spot on Thursday night at 9pm local time the week of the Annual Assembly of Hospice and Palliative Care (but just to be clear it is not an official part of the meeting). And as always, feel free to invite and bring any colleagues or new friends with you as this is not an exclusive crowd.

So for 2018, that means you should clear off the evening of March 15th. We will, of course, be doing our traditional pub crawl starting at Sonsie at 9pm. Around 10pm we will likely be moving on to the next destination. Like always though, these are rough estimates of time, so if you want to know the details, follow the hashtag #HPMparty on Twitter. You can also find information and people talking before, during and after the event on the Facebook Event page.

And new this year, we are adding an event! Get ready for the first ever #HPMparty Escape Room! We are partnering with Escape the Room Boston to reserve three different themed rooms over five time slots from 7:20 to 9:40. (We can open up a later one if the demand is high!) You can always join up with the pub crawl before or after (or not at all, if that is not your thing!). No need to buy anything or sign up for anything if you are just doing the pub crawl.

ESCAPE ROOM DETAILS: Each room holds 8-12 guests where you will work together solving puzzles and clues with excellent communication skills (honed as excellent hospice and palliative care clinicians of course). It will cost $30 per person and we only have around 60 slots, so sign up soon! All of the Escape Rooms are reserved exclusively for us, so you will be working with fellow clinicians and not somebody on their first date...awkward! You will want to get to the Escape room 15 minutes ahead of your scheduled time and it takes 15 minutes by car and 20 minutes by train. Be on time! Once your room starts you will be there no longer than 70 minutes (60 to finish the room and 10 to wrap up). If you are good you’ll be done early!

Example: Reserve the 9:00pm time slot. Leave for Escape the Room Boston at 830 to get there by 845. Do the Escape room at 9p and be done at 10p, take pics and leave!

Ways to follow the party from near or far:
#HPMparty twitter feed
#HPMparty Facebook Event Page

And if you are not already doing it - Follow Pallimed on Facebook, Twitter and Instagram and Follow GeriPal on Facebook, Twitter and your favorite podcasting app.

Friday, February 16, 2018 by Christian Sinclair ·

Wednesday, February 14, 2018

Did You Have To Say “Yet”?

by Ryan Nottingham and Gregg VandeKieft (@vandekieftg)

A middle-aged man* came to our ambulatory palliative care clinic with his family. With the exception of his recently diagnosed brain tumor, he was in peak physical condition. His diagnosis weighed heavily on his family and his personality changes and angry outbursts left them frayed. He did not feel the same burden as his family since these outbursts came to him in the form of blackouts. We could visualize him as a man of few words before his diagnosis, someone who would speak up with a dry one-liner. During this visit, his humor was touched with acidity. As we began our conversation, his pent up frustration slowly infused into the room. His wife was able to put her concerns on the table while his children held his hands. He visually softened and received their words without response. After the catharsis, when all questions had been asked and tears had been shed, the family looked exhausted but ready to move forward. Before the visit concluded, the physician completed a brief physical assessment. As he worked his way through the neurological exam, he noted positively to the patient, “no loss of strength yet”.

The patient looked up at him and with a thick voice asked, “Why did you have to say ‘yet’?” The pause was palpable. Visibly chastened, the physician responded, “You’re right. I apologize. That wasn’t very sensitive.”

Providing seriously ill patients with an honest idea of their disease while also helping them maintain a sense of normalcy in their life can be a delicate balance. Our language is laced with subtle reminders of prognosis. They do not have a disease, it is a progressive disease. Suddenly, CPR moves from being a standard measure to a heroic measure. Even if the phrases do not attest to lifespan, there are also reminders of their perpetual patient status. Our clinic recently went through a name change, from outpatient to ambulatory to avoid this exact issue. And the implications of the single word “yet” conveyed a message clearly heard by the patient that this seasoned palliative care physician, highly regarded for his communication skills, had in no way intended: “Your tumor hasn’t robbed of your strength yet, but it will!”

As much as we use our words to care for our patients, they also have the potential to cause harm. Many medication side effects are frustratingly vague and similar to potential disease symptoms; fatigue, headache, moodiness, and nausea, for example. While counseling patients to be aware of these effects, we can inadvertently trigger them to be hyperaware of their body processes. This information can subsequently lead to new or exacerbated symptoms that might not have been an issue otherwise. Allocating the appropriate amount of emphasis on various counseling points can ensure the patient is both well informed and at reduced risk of false-positive side effects.

For our patient, the amnestic qualities of his outbursts and his physical strength buffered him from his diagnosis. Even after our discussion, after his family had pulled out all the skeletons, he remained behind in the closet. In the article What It’s Like to Learn You’re Going to Die, the term “existential slap” denotes the moment when a dying person viscerally comprehends their upcoming demise. For some it comes at the time of diagnosis, others as their body begins to reflect symptoms of disease. For our gentleman, it would be several visits before his full realization of his clinical situation. So hearing the implicit message of his impending decline – of which he was cognitively aware but not yet emotionally prepared - was unwelcome. The tenor of the entire encounter was adversely affected by one unconsciously uttered word.

The balance between honesty and tact varies depending on the person, where they are in their illness trajectory, and the extent to which they have “processed” both the past and future course of their illness. Striking the right balance requires insight into the patient’s understanding of their illness and how they would like information to be presented. Palliative care opens conversations in which many people do not wish or expect to find themselves. Skillfully and sensitively dispensing the correct blend of hope and facts takes training, and occasionally trial and error. Sometimes, the only way to find out is to have a misstep – perhaps a misstep of a single word. Just remember: Slips happen. Some will be embarrassing; others inimical; some would even make Freud smile. These situations happen to everyone, in every discipline, at every experience level. So whether it is a misstep, misspeak, or mistake, remember to get back up and keep going. Your future patients will be grateful of how the experience helped you grow.

*Identifying details changed to protect patient privacy - Ed.

Ryan P. Nottingham, PharmD is a clinical pharmacist in Randallstown, MD. A recent transplant from Washington State, she enjoys exploring her new home with her husband and puppy and adding Old Bay to everything! Gregg VandeKieft, MD, MA is Medical Director for Palliative Care for Providence St. Joseph Health, Southwest Washington Region, and Associate Medical Director for the Providence Institute for Human Caring, Torrance, CA. He sometimes says things he wishes he could take back. You can find Gregg on Twitter at @vandekieftg

For more posts on communication, click here.

1. Barsky AJ. The Iatrogenic Potential of the Physician’s Words. JAMA. Published online October 31, 2017. doi:10.1001/jama.2017.16216
2. Dear J. What It’s Like to Know You’re Going to Die. The Atlantic. Published online November 2, 2017.

Wednesday, February 14, 2018 by Pallimed Editor ·

Sunday, February 4, 2018

Proposed Medicare Changes to Limit Opioid Prescribing

by Chad Kollas

On February 1, 2018, the Centers for Medicare & Medicaid Services (CMS) published its Advance Notice of Methodological Changes for Calendar Year 2019. Included in these proposed rules were several directives intended to reduce "Opioid Overutilization” (see p. 202), including formal adoption of the “90 morphine milligram equivalent (MME) threshold cited in the CDC Guideline, which was developed by experts as the level that prescribers should generally avoid reaching with their patients (p. 203).” CMS proposed “adding additional flags for high-risk beneficiaries who use ‘potentiator’ drugs (such as gabapentin and pregabalin) in combination with prescription opioids (see p. 204).” CMS also proposes a 7-day limit for initial fills of prescription opioids for the treatment of acute pain. The proposed CMS rules are unclear about exceptions for patients enrolled in hospice or with cancer pain, but there seems to be a mechanism in place for prescribers to apply for an exception for each individual patient (p. 209-210).

On learning of these proposed CMS rules via social media, many members of the hospice and palliative medicine (HPM) community expressed several profound concerns: Foremost, how would these changes impact our patients and their care? How will the rules affect our daily practice? And, for the HPM policy wonks, how did the 90 MME threshold make its way into proposed federal policy without evidence from the medical literature.

As one of the aforementioned HPM policy wonks, I’d like to address the last question first. The 90 MME threshold was born in 2012, as part of a non-solicited petition to the Food & Drug Administration (FDA) from a group of physicians who identified themselves as subject experts and referred to themselves as Physicians for Responsible Opioid Prescribing (PROP). Ultimately, after reviewing open comments from stakeholders, the FDA declined adoption of PROP’s 90 MME proposal.

Undeterred, PROP successfully sought to place the 90 MME provision in the CDC Guideline for Prescribing Opioids for Chronic Pain, leading to criticism of the CDC for a lack of transparency by the pain management community. Ultimately, the CDC did recognize that certain patient populations, including patients receiving hospice and/or palliative care, might legitimately require opioid doses exceeding the 90 MME limit. The current CMS proposed rules, however, do not offer an exemption to this limit for these patients; they would instead further codify an opioid dose limit that was largely created in an arbitrary fashion based on a self-selected group of physician “experts” with no accountability to the HPM community.

This observation likely concerns those of us who ask how – as HPM practitioners – the proposed CMS rules will affect our practice. Of much greater importance is how these proposed rules would affect our patients. Opioid stigma in the setting of “The Opioid Crisis” is already a major barrier to patients receiving hospice and/or palliative care that adversely impacts their access to medications needed to maintain their quality of life. For example, in a recent study of 250 patients receiving outpatient palliative care at a cancer center, 54% reported feeling stigmatized for their use of opioid analgesics and 73% reported difficulty filling opioid prescriptions (Kollas CD, Boyer-Kollas B. Assessing Opioid Stigma in Oncology Outpatients Receiving Palliative Care for Cancer-related Pain. Accepted to 2018 AAHPM Annual Assembly). The proposed CMS rules, in their current form, would add to patients’ perception of opioid stigma and, at best, will result in delays in receiving medications to manage their chronic pain. At worst, some would not receive the amount of medication needed to relieve their pain, severely impacting their quality of life or driving them to desperate measures, like seeking illegal drugs. Ironically, CMS new rules could unintentionally accelerate the emerging trend in opioid overdose deaths: deaths from illicit drugs, like heroin or illegal fentanyl (see CDC data here).

While this sounds catastrophically bad, there is a small silver lining within CMS’s announcement; there will be an open period for comments from stakeholders. CMS will review all comments submitted via its website, whether submitted by an individual patient or physician or from a patient advocacy group or medical organization. And, as evidenced by the FDA’s response to the 90 MME proposal from PROP, these comments can make shape policy in a way that protects our patients’ access to critically-needed pain medication. Social media can be a great tool to help build a successful coalition of HPM stakeholders, but time is short – comments must be submitted by Monday, March 5, 2018. To submit comments as an individual, go to and enter docket number “CMS-2017-0163” in the search field, then follow the instructions for “submitting a comment.”

Dr. Kollas has provided outpatient palliative care at Orlando Health UFHealth Cancer Center for over 17 years. He first wrote about his personal experiences with chronic illness and pain in a 1997 article in the “On Being a Patient” series in Annals of Internal Medicine. You can find him on Twitter at @ChadDKollas.

Editor's note - The graphic was updated to reflect 2019 changes not 2018 changes as was indicated in the original post. Also, the wording was changed from 'no exemptions' to 'possibly (but not guaranteed).'

Sunday, February 4, 2018 by Pallimed Editor ·

Saturday, February 3, 2018

An Impromptu Group Conversation With Women in Hospice and Palliative Medicine

Collectively written by Allison Jordan, Katie Harmoney, SarahScott Dietz, Jeanette Ross, Emily Hahn, Meredith MacMartin, Christian Sinclair, Rachel Thienprayoon

Waking up today February 3rd, I (Christian) saw a discussion on our Facebook private messages for the Pallimed page about what we should post for National Women Physician Day (which is held on February 3rd the birthday of Elizabeth Blackwell, the birthday of the first US woman physician.) Jeanette had found the 2016 Pallimed post written by Meredith MacMartin and we posted that, but then I thought it would be great to write some fresh content on this new celebration. So I jumped over to Twitter and reached out to a handful of female colleagues on a direct group message and asked my co-authors above:

My first thought was, “let’s use the reach of Pallimed and social media to amplify women’s voices on this commemorative day!” As soon as I sent the DM I realized, maybe this wasn’t the wonderful idea I initially thought.

Oh my gosh…
the horrible realization hit me…
I was asking women peers to do work…
on a weekend…
with no notice…
on a day focused on the challenges and accomplishments of being a woman in medicine…
challenges often from the results of a historical and current male-dominated workplace...
and I am a man.

Thankfully they didn’t point this out to me, but what followed was a really fantastic conversation that Katie noted: “We could publish this thread!” So we organized and streamlined some of the discussion would love to share some of our observations to broaden the conversation.

The Initial Ask

Sinclair: Sorry for the group DM, if some of you don't know each other. But I was wondering if any of you would be interested in writing a piece on National Women Physician Day for Pallimed. Meredith (@GraniteDoc) wrote one in 2016. We didn't have one in 2017, and this one just snuck up on me and I didn't think to get one drafted before this year's day. You can email me with a submission. Will get it published today or tomorrow if I get it today. And if you want to enjoy your weekend, not writing, that is perfectly acceptable! No pressure, honest.
Harmoney: I'd love to, but am actually volunteering at a cancer fundraiser.
Jordan: Is there a specific topic that you would like the writers to discuss? LOL otherwise I’ll just send you “being a woman in medicine is hard. We are still working in a system that was designed by men ages ago. Women need to be at the table to redesign the system so that it works for everyone.”
Dietz: May be able to, subject to the whim of a 16 day old. Right now I would probably rant in a sleep-deprived manner about parental leave. πŸ˜† But yes, what Allison said, LOL.
Ross: Sarah, congratulations on the new baby! I was thinking something about women in #hpm but I don’t think I know all relevant info. Could go:
First hospice and palliative medicine (HPM) Physician: Dr. Cicely Saunders
First USA HPM Physician: Dr. Elizabeth Kubler-Ross?
Like first AAHPM woman president ....
Dietz: I would love to work on a post about women leadership in early HPM but I don't think it's going to come together this weekend. Next year's women's day?

On Mentors

Ross: Did you have a woman mentor play an important role in HPM for you. I would say that is why I’m grateful to mentors who help me think about how to balance life and work.
Jordan: Mentorship is HUGE.I could not have done this without male and female mentors
Dietz: I haven't had a female mentor. I can only imagine that would be a very helpful experience! Jordan: Sarah, I would strongly advocate for a mentor. And peer mentors too. Sometimes your girlfriends will be great cheerleaders to give you the courage to ask for what you need/want. I have different mentors for different reasons. I have a mentor for work/life balance. I have a mentor to help me with leadership skills, and I have a mentor to help connect me with people. I have the mentor for when I need a kick in the pants to push me to not settle.
Harmoney: Yeah. It's so important to pick mentors for each thing.
Jordan: LOL! I need a lot of help. It takes a village! But I can’t do this alone and there are women and men out there who have AMAZING knowledge.
Harmoney: My HPM mentor is a lady. She's very helpful and open about her own struggles. Helps that she’s late/mid-career.
Jordan: So the mentorship is great, but it still doesn’t fix systemic problems with the way our jobs are designed.
Harmoney: We need a fundamental culture change.
Jordan: I agree Katie. if we all work together and advocate for what we need, with the support of mentors, change can happen. We need people in leadership and positions of influence to help change the culture. Otherwise we will continue to have burnout, physician shortages, and people choosing to not go into HPM or medicine.
Harmoney: We have this in peds oncology too. So much pressure, jobs are super competitive, funding is scarce.

The Future of Medicine

Dietz: Baby woke up, reading back. (She’s amazing. I have two boys but today I’m really reflecting on what I want medicine to look like, if she decides to be a doctor like her parents. I really want to not have to worry that it’ll be different for her than it would be for her brothers.)
Jordan: I worry about my goddaughters and they see me and their mom in medicine... I want it to be different for them. Right now they don’t understand what we do (they are 2 and 4) but they clearly get we are not like other women in their lives.
Harmoney: Medicine also has a culture of us doing everything: patient care, research, grants, writing. It’s unsustainable.
Jordan: “Medicine is a very jealous lover. It will take as much time as you give it.”
Dietz: There’s an enormous pressure to be perfect or super-human in Medicine, because of the part where we have people’s lives in our hands. It makes it really hard to admit there’s a problem. Any problem, from “my car wouldn’t start this morning” to “I am so depressed I can’t get out of bed.”
Harmoney: Gifted physicians are being forced to choose family versus career because it's a system not designed to accommodate both.
Dietz: True for both male and female! The system is damaging for both genders but it exists in part because the structure is built on one parent at home full time to enable crazy work hours and expectations.
Harmoney: Agreed.
Jordan: There is talent literally walking away from medicine because of poor design. I bet burnout would decrease and we could retain talent if we had a part in the design.
Thienprayoon: My husband had a job gave him 6 weeks paid paternity leave. which was AWESOME. he felt guilty for taking it, since no one else does, because that is the culture of the company. Looking to the future, leave is not something he'll likely get again, which impacts us and our whole family SO much.
Dietz: My husband had to spend 2 weeks of sick/regular leave for his "paternity" leave, since FMLA would have been unpaid and we can't afford that. His group worked with him but it shouldn’t be this complicated. It's ridiculous. There is such a backlash for physicians in general against taking time for family, things as simple as looking for positions that don't require call, or even that do have call but on a predictable schedule instead of random assignments. Pumping at work, heaven forbid. I’m grateful my current workplace is supportive but I know many who are not as lucky.

Let’s Publish This!

Ross: I like this thread Esther Choo (@choo_ek) has going showing all the disparities in medicine.
Harmoney: We could publish this thread.
Dietz: Christian didn't know what a bag of worms he was opening in his DM. πŸ˜†
Jordan: LOL Christian got awfully quiet…
Ross: Christian, the post could be about how you tried to get HPM women to write a post and you got an earful about why we couldn’t.
Dietz: LOL
Sinclair: I just went to make lunch for my kids and came back to all this! I learned a lot and see a lot of some of the issues Kelly and I face together and as individuals. I like Katie and Jeanette’s idea.

The Hard Work of Hospice and Palliative Medicine

Jordan: There needs to be more flexibility. This job and especially Palliative Medicine is HARD. You can’t expect me to see a high number of consults, make people sad all day, and then get upset when I want to not take call on weekends and nights.
Harmoney: But the issue is that we are hard on each other. We’re part of the problem.
Jordan: We have to speak up and say NO to some of the foolishness.
Harmoney: And also support one another. We've got to advocate for our colleagues, male or female. It's really the only way to fix this. I do think that medicine has worn down my resilience. People in medicine need to advocate for our health.
Jordan: We need to not suffer in silence. Women physicians and especially us doing HPM should not work alone. We need each other!
Dietz: We do!!
Harmoney: We need to hold each other up!
Jordan: I’m thankful that during my med/psych training they paid for us to go to therapy.
Harmoney: I think of therapy as a requirement in medicine.
Jordan: I worried about my non-psych colleagues. They didn’t get help and their department would NOT cover therapy. Therapy should be part of the redesign of medicine.
Okay. We need:
1: women at the table for leadership
2: women included in the redesign of medicine
3: mentorship
4: no stigma with seeking mental health services
5: health systems that support people with families or who just want to have a life outside of the hospital
6. Support for those in academics to advance their careers and STAY in medicine
Dietz: Recognition that men suffer under the current system as well. (Toxic masculinity, anyone?)
Jordan: YAS Sarah!
Dietz: Just a second, I have a mac and cheese situation.πŸ˜†
Sinclair: Sounds delicious!
Hahn: I want mac and cheese.
Harmoney: Me too!
Dietz: 3 yo NEEDS mac and cheese y'all. It's dire.
Harmoney: It's a serious need.

Women Leadership in Hospice and Palliative Medicine

Ross: I wonder if there any stats about how women are represented in HPM, like how many are in leadership positions like regional hospice medical directors, division chief, etc?
Jordan: Good question. How is the Academy (AAHPM) doing? How is HPM doing?
Ross: My gist is that we may be better than other specialties. HPM being founded by a woman and I think a good group of women started AAHPM. For example, Chest (the pulmonary society) just now has a woman president-elect. That doesn’t mean we still have room to grow.
Sinclair: I count 15 men and 12 women as Presidents of AAHPM since founding in 1989.
Jordan: Plenty of room to grow. I think women would be more inclined to take leadership positions if they knew they would have adequate support at work AND at home.
Sinclair: I recall being surprised in 2008 or 2009 a session at the Annual Assembly of HPM focused on “Women and Leadership in HPM.” My career had essentially been working only with women physicians as colleagues and supervisors. I was wishing for more male physicians honestly. Only recently did I realize what the need for that session was. Currently, our HPM physician group is 3 men, 8 women led by a woman.
Ross: In my department, we are like 8 women to 2 men HPM specialists.
Harmoney: HPM seems much more balanced than oncology. HPM is a field where we have this discussion.
Jordan: True Katie. We actually have a better shot at changing the culture. Because we are new, we have a unique opportunity to negotiate and define our role as we become part of the fabric of healthcare. We might be a beacon of hope that can become a model for other outdated specialties.
Harmoney: I was floored during interviews because I was asked about self-care.
Jordan: The other specialties may look to HPM to figure out how to do self-care right. So we have to get it right and set the tone. And with a woman at the lead, it can happen. It could happen with a guy too, don’t get me wrong.
Harmoney: The right guy.

Future Collaboration

Ross: I see an AAHPM 2019 submission in our future.
Dietz: Love it!
Harmoney: As a group? I’m down. I'm interested to see what this looks like.
Jordan: It’s going to be epic
Hahn: Oh my just read through this whole thing! It really could just be published!

You can find all of the authors on Twitter: Allison Jordan (@doctorjordan) , Katie Harmoney, SarahScott Dietz (@SDiezMD), Jeanette Ross (@RossJeanette), Emily Hahn (@TexasKidDoc), Meredith MacMartin (@GraniteDoc), Christian Sinclair (@ctsinclair), Rachel Thienprayoon (@RThienprayoon). They often tweet about #hpm.

Saturday, February 3, 2018 by Christian Sinclair ·

Wednesday, January 31, 2018

Innovation and Design at End of Life: Tea with Ivor Williams

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.

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

Wednesday, January 31, 2018 by Lizzy Miles ·

Saturday, January 27, 2018

Exploring Team Composition in Palliative Care

By Brianna Morgan (@BriannaMorganNP) and Elise Tarbi (@EliseConant)

Amidst rapid growth in the number of palliative care programs, the December 2017 issue of the Journal of Palliative Medicine calls for a pause to consider the blueprints for how we build moving forward. In the issue, Kousaie and von Gunten (2017) compare two hospitals, one that has an established advanced practice nurse only model of palliative care delivery (APN model), and a second hospital implementing an interdisciplinary team including physicians, APNs, social workers, chaplains, and pharmacists (team model) for the same purpose. Compared to the APN model, Kousaie and von Gunten report that the team model reduces length of stay and increases cost savings.

At this moment, there is value in reflecting and evaluating the current practice of palliative care in order to build a better future, including the impact of the composition of palliative care delivery teams. However, we have a number of concerns with the methodological approach to this study and the conclusions drawn from its data.

Of primary importance, the conclusions of this study warrant further scrutiny. In explaining the outcomes described above, the authors suggest that differences in communication styles may play a role, observing that while the APN model tended toward “indirect” interactions with consulting teams, the interdisciplinary team “directly” engaged the consulting team to alter the plan of care more frequently. However, the research design and data do not offer enough support for this conclusion.

First, without outlined details on study design, to which a qualitative study would be well suited, it is unclear exactly how the teams were observed. Second, when reporting observed differences in communication, the authors describe the interdisciplinary team as “the team with the physicians.” This seems to imply that the observed differences in communication are traced to the presence of a specialist physician. A valid question raised by this interpretation is whether this difference in communication is attributable to the presence of a single specialist or discipline, or whether there is something unique about being part of an interdisciplinary team that influences communication styles and therefore, outcomes. Lastly, there is the question of whether these results are generalizable. Not all inpatient, clinic-based, or home-based programs, may have the resources to staff an interdisciplinary team and scarcity of fellowship programs limits the availability of dedicated specialist palliative care physicians. Team composition needs to be investigated separately across these care environments.

In this short letter to the editor, the authors include information on only a handful of variables (e.g. provider composition of the teams, provider FTE/consult and admission volume, length of stay and average cost savings/day). It is worth considering whether other contextual factors impact the success of any palliative care team, as well as the particular results of this study. This includes provider factors (e.g. gender, years of experience, feelings of autonomy and empowerment) as well as environmental factors (e.g. disease-related characteristics of the patient population, systems-level signs of support for palliative care such as palliative triggers). Additionally, length of stay and cost savings may not be the most meaningful outcome measures for evaluating the success of a palliative care team. Consideration of outcomes from the Measuring What Matters initiative (Unroe et al., 2017), including care consistent with treatment preferences or a global assessment of patient/family experience (such as feeling “heard and understood” proposed by Gramling et al. (2016)), may reveal a more complete view of the influence of the palliative care team composition.

With mounting evidence highlighting the benefits of palliative care, we agree with Ferrell and Smith (2017) that there is a need to evaluate which practices provide the best blueprint to refine and define the future of palliative care. In unpacking the black box of palliative care, exploring the composition of the palliative care team is an appropriate place to start. Determining which metrics best indicate success in which environment will help in identifying teams most suited for the appropriate outcome. Understanding the environment, including the needs and resources of each setting, is imperative in determining which team composition is appropriate for which setting. This will create the type of robust, rigorous regional and national research that is needed to define and refine optimal care delivery models in palliative care.

Brianna Morgan, MSN, AGPCNP-BC, ACHPN is a Nurse Practitioner and Palliative Care Coordinator at the Abramson Cancer Center at Pennsylvania Hospital. Elise Tarbi, MSN, AGPCNP-BC, ACHPN is doctoral candidate in Nursing at the University of Pennsylvania where she is studying existential distress. The pair ponder palliative care while running through the streets of Philadelphia with their dogs.


Ferrell, B. R., Smith, T. (2017). The Landscape is Changing. Journal of Palliative Medicine, 20(12), 1306–1306. (Pay Wall)

Gramling, R., et al. (2016). Feeling Heard and Understood: A Patient-Reported Quality Measure for the Inpatient Palliative Care Setting. Journal of Pain and Symptom Management, 51(2), 150–154. (Open Access)

Kousaie, K., von Gunten, C. F. (2017). Models of Palliative Care Team Composition: Nurse Practitioner-Only versus Interdisciplinary Teams that Include Specialist Physicians. Journal of Palliative Medicine, 20(12), 1313–1313. (Pay Wall)

Unroe, K. T., et al (2017). The Implementation of Measuring What Matters in Research and Practice: Series Commentary. Journal of Pain and Symptom Management, 54(5), 772–775. (Pay Wall)

Saturday, January 27, 2018 by Pallimed Editor ·

Friday, January 19, 2018

It’s Not the Death, It’s the Dying: Moral Distress in Palliative Care

by Vickie Leff

Every day, we get involved in unbelievable and incredible situations. Tragedy, sadness, horrific trauma, despair, and hopelessness all wrap themselves around the cases we drop into. We step onto the stage and become part of the story.

Moral distress – the discomfort, angst, and frustration related to situations in which we think we know the “right thing” to do, but cannot due to the situation – is endemic to palliative care and hospice work. 

Some examples are:

  • Aggressive chemotherapy for a dying cancer patient with days to live.
  • Dumping the truth on a patient overwhelmed and alone.
  • Following the treatment wishes of a family that which are incongruent with the patient who can’t speak for themselves.
  • Prolonging dying because a family says they are waiting for a miracle.
It’s not the same as the stress we feel day to day about our work as palliative care clinicians. This feels different; it gets under our skin, and stays with us. What do we do with these feelings? How do we recover when our souls have been tattered? How do we suffocate the intense desire to “change the system”? How do we do this and remain present and authentic to our patients and families looking at their situation?

I scream in my head: Why is the family not letting him die peacefully? Why is the team pushing him out the door, don’t they know he’s dying? It’s a useless exercise, but it helps alleviate (momentarily!) my anxiety when dealing with these complicated, unanswerable questions. As palliative care clinicians, we calmly address these issues, advocating for our patients, hoping our perspective and expertise may provide some alternatives. Many times, we are successful in changing the conversation; sometimes we are not. And then there are the cases when we become as entangled as everyone else, and it seems like a failure. I often feel selfishly relieved when a patient dies, because the angst has ended.

Moral distress is worse for those of us who do not have as much power as others, especially among nurses1. This makes sense; doctors can more effectively change treatment, write orders, and direct care. I spend a good deal of time speaking with bedside nurses and other colleagues about their distress over plans of care, and their frustrations with the surgeon who won’t consult palliative care because they don’t want to “give up.” Most of all, I listen every day to the struggles they have related to feeling powerless in extraordinary situations.

The “crescendo effect” of moral distress is real and dangerous. It can linger for months and years. We all have a difficult case burned into our minds. The result of moral distress, especially if we are exposed to it frequently, causes emotional exhaustion, unrealistic expectations, close-mindedness, and boundary blurring between the suffering of the patient and the family and our own 2.

As a clinical social worker, I was trained on how to practice self-awareness, or how our issues, reactions, emotions are triggered by therapeutic encounters; and how these impact our work with patients and families. It’s not as easy as it sounds; this takes deliberate practice and natural curiosity. And even then, we are not immune from moral distress. Self-awareness is probably the one skill  we can learn that can build moral resilience and help us remain emotionally available to our pts/families and colleagues.

We can choose to sweep it aside, become immune and/or cynical or we can take time to examine moral distress and work toward solutions.

Identify it early on. Speak about it directly with each other and our colleagues not as failure or barrier but as an opportunity. Only then can we untangle our opinions, and the emotions that keep us frustrated and sometimes frozen.

We can also focus on resilience. While many resilience strategies are solo in practice, the more social strategies can help us most with moral distress. Informal social support, debriefings3. (See also the Pallimed article, "The Clinical Social Worker Role in Interprofessional Practice"), roundtables, case discussions, Schwartz rounds can all give voice to this distress. Learning from each other, decreasing the isolation that comes with stress, and finding creative solutions to unsolvable problems can give us the glimmer of hope we need to continue and even feel refreshed.

Challenging ourselves to see the other side of an argument or plan, remaining open minded, avoiding catastrophizing, and remaining curious (along with regularly scheduled vacations!) can ensure we continue to find meaning and occasional joy in this emotionally difficult work.

We should expect moral distress; it is part of our work. We can welcome it into our daily discussions as a way of understanding our patients, families, and ourselves.

Whitehead, P. “Moral Distress Among healthcare professionals: Report of an Institution-Wide Survey”. 2014. J. of Nursing Scholarship. 47:2.
2 Epstein, E., Hamric, A. “Moral Distress, Moral Residue, and the Crescendo Effect”. 2009 J. Clin. Ethics. 20(4).
3 Leff, V. “A Successful Debrief Program for House Staff. J. of SW in EOL & Pall Care. 2017 1552-4256.

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.

Photo credits:
Title photo Vincent Burkhead via Unsplash
Mannequin Edu Lauton via Unsplash
Fire Amuri Am via Unsplash

Friday, January 19, 2018 by Pallimed Editor ·

Monday, January 15, 2018

Top 10 Pallimed Posts of 2017

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 MandrolaAbagail 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)!

Monday, January 15, 2018 by Christian Sinclair ·

Monday, January 8, 2018

Looking Ahead to 2018 for Palliative Care and Hospice

by Christian Sinclair

In 2016, I made a list of upcoming events in palliative care and hospice. For some reason, it fell off my list of to-do's in 2017, but I wanted to bring it back because it is good to see all the important things happening in our field. Here are some of the things to put on your calendar right now, so you do not miss them! If you want to help out with maintaining this, it would be great to have a colleague and it doesn't take that long, please email me (below). We could even go crazy with the Google Calendar and make different ones that are relevant to different disciplines/interests, international and add submission deadlines for conferences. Technology makes this simple, I just need a few more hands.

To access these dates via Google Calendar (HTML), click here. (still adding some of the below over the next few days)

Winter (Jan, Feb)

Spring (Mar, April, May)

Summer (June, July, Aug, Sep)

Fall (Oct, Nov, Dec)


#hpm chat (Twitter) - Last Wednesday night of the month 9p ET - Subscribe to monthly updates on topics at

If you know of any other major events, please add them in the comments below and we may add them to this growing list.

If you would like to help maintain this list and the Google Calendar, it is pretty easy if you have a Gmail address, and can be taught in less than 30 minutes, please email editor - at-

If you are interested in writing up a report for a major conference listed above, we are always looking for traveling correspondents. Please read this overview of writing conference reports and submit the form on that page.
Christian Sinclair, MD, FAAHPM is the editor-in-chief of Pallimed, and always loves a good conference.

Monday, January 8, 2018 by Christian Sinclair ·

Sunday, January 7, 2018

Blue Ribbon Patients: A Tool to Protect from Unnecessary Transitions

by Rick Strang (@rickstrang)

Bed pressures in busy hospitals often means that less acute patients are moved to different wards in order to make space for patients admitted from the emergency department. We are often faced with some difficult decisions in our current NHS. End of Life (EoL) patients seem particularly at risk of being moved, which can be very distressing for families, friends, the patient and the care teams. It is also quite common for these moves to occur into the night or at weekends. These periods are covered by site managers, bed managers, and on-call clinicians rather than the usual ward teams and therefore their knowledge of the patients can be very limited. Indeed, they will often require sitting down and reading through the notes before making decisions. This is where we thought we may be able to have an impact by flagging clearly those patients whom we should not move. The Blue Ribbon Patient sticker idea came out of that.

The scheme is not exclusive to EoL patients, although it predominantly affects them and was started particularly for them. For example, we had an elderly man who had been profoundly deaf since childhood with several other very complex needs on one of the wards. As he became better he was likely to get moved. However, some of the staff had learned to sign and he had built up an important trusting relationship. Moving him and starting again wasn’t going to be helpful so he was made a Blue Ribbon patient.

It is vitally important that “Blue Ribbon” doesn’t become a label for “going to die”. It just means, for a whole host of reasons, that this patient should not be moved. It’s also very important not to overuse the scheme. Patients must be carefully considered and nominated by a senior nurse or nurse specialist.
Blue Ribbon patients are notified to the Site Manager who keeps a “Blue Ribbon List” with her notes.

Blue Ribbon patients are noted and discussed at Bed Meetings, reminding folks that they are not to be moved.

A key element of the scheme is to ensure that there is VERY senior input into a decision to move the patient. This makes sure we really, really are in last resort territory before a move is made. If there is a requirement to move a Blue Ribbon patient for a non-clinical reason this must be agreed by the Head of Nursing or by the on-call Director if it is out of hours. Either the Head of Nursing or the on-call Director must then contact the family to explain the reasons for the move and apologise. We’ve deliberately made it a very senior responsibility as we view moving these patients as a very important decision if it has to happen.

All Blue Ribbon patients have the requisite sticker placed on the front of their notes and any care planning documentation. In this way, even clinicians unfamiliar with the patient are reminded that there are extenuating circumstances around this person that means that moving them to another ward is unlikely to be in their best interests.

The Blue Ribbon Patient scheme is integral to our Transfer of the Dying Patient policy.

Prompted by two quite difficult episodes involving the movement of dying patients we implemented this scheme rapidly; a two-hour discussion with key teams and stickers back from the printers within 24 hours. That was six weeks ago. Since then not a single EoL patient has been moved despite ongoing bed pressures. We have stopped all non-clinical transfers for dying patients thanks to this scheme. It’s been quite a revelation and folks have really taken to it. It’s not complex or expensive to implement. It seems that sometimes simple just works!

Rick Strang RN is Emergency Care Improvement Lead at Isle of Wight NHS Trust in England. When not involved in all types of emergency care Rick is usually finding innovative ways to avoid household chores.

Sunday, January 7, 2018 by Pallimed Editor ·

Friday, January 5, 2018

Diary of a New Hospice Volunteer

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.
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 Coly 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?

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.

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 via Unsplash

Friday, January 5, 2018 by Lizzy Miles ·

Pallimed | Blogger Template adapted from Mash2 by Bloggermint