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by Lizzy Miles (@LizzyMiles_MSW)

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

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

Let’s look at these two scenarios:

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

Or

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

Same scenario. Which one feels better to you?

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

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

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

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

There is no happy place. Happiness is an attitude.

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

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

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

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


Love and companionship can take place anywhere. 

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

Language matters. Words matter.

Let's talk about RESPITE

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

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

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


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

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by Christian Sinclair

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Tommy Steel's statue of Eleanor Rigby, Liverpool

 by Kristina Newport

As hospice and palliative medicine practitioners, we have the opportunity to witness the lives and deaths of people from all walks of life. Many people we care for die surrounded by loved ones who are full of memories, pain and grief. Others, however, die alone, or with relationships too strained to bring value. When we care for these people, we learn who they are and become their witnesses. We hear their stories and secrets, as Lizzy Miles MSW discussed in a recent Pallimed post. We witness their end. And we remember.

Uberto Pasolini’s 2015 movie, Still Life, illustrates the life of one person who was serious about remembering. The main character, John May, is a government worker whose job it is to find family members of people who died alone. He works meticulously, exhausting all paths to find someone who cares. If he fails at this task, he shows his own respect by planning and attending funeral services no one else attends. He keeps his own photo album and remembers people he never knew in life.

"Sad Lady" ~Stella Newport, 4 years

I’ve often thought that I should keep a similar record of the patients I’ve met who have died. When I started fellowship, I kept a notebook of names. It started collecting dust by month 2. In practice, I’ve jotted down notes without regularity. Over the years, unique cases stand out, but specific names and stories fade.

The risk of increased numbers of people dying alone has the potential to increase as more people reach their elder years alone. Maria Carney, MD completed a literature review revealing increasing numbers of elderly US citizens without children, nicknamed “elder orphans”. A similar phenomenon is documented in the UK, with estimates that by 2030, two million pensioners in Britain will have no adult children. Both articles discuss the rising need for personal and medical care but they also raise the question: who will remember them?

This is hardly a new concept. We even have a soundtrack, nicely provided by the Beatles in their 1966 song Eleanor Rigby. Although the idea is old, it feels like a valuable and timely concept to consider. What does it mean for us, as providers and as people, to carry these people with us, or not? Particularly when we hold stories no when else knows, with no one to pass them onto? I wonder, what do other providers do to remember? To acknowledge? Is it our job to do the remembering, like John May did? Does that benefit anyone other than the remember-er? In a recent conversation with a hospice social worker, she pointed out the value in getting to know her patients, if for no other reason but that the patient will feel they will be remembered.

 

Kristina Newport MD (@kbnewport) practices Hospice and Palliative Medicine in Lancaster, PA where she also spends time running after her children, 4 and 6.

Photo Credit: Tommy Steel's Staue of Elanor Rigby via Wikimedia
Illustration Credit: Sad People by Stella Newport, all rights reserved

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A conversation between two specialists
by Allie Shukraft and Lizzy Miles

At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population.  These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss some of the differences and similarities between these two seemingly divergent specialty populations. Allie and Lizzy also describe their social worker roles as they relate to their patient groups.

This article about the initial social work role in hospice and palliative care is the fourth article in a series of joint conversations into these populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions)

Pre-admission discussions

Lizzy: There are multiple stages during end of life where a hospice social worker might get involved. I have been asked by facility staff to have the initial conversation with families about hospice. It used to surprise me that I would be talking about hospice to the family before the physician does, but now I understand. The patient may have seen a specialist and received a Stage IV cancer diagnosis, or they have had a series of sudden changes. The nurses and aides at a facility see the patient every day and may themselves believe hospice would be beneficial, but don’t feel comfortable having the “hospice” conversation with families by themselves. I may be told that the family is not yet aware of the patient’s eligibility for hospice, and my role is to provide information about hospice for the family to make an educated decision. My goal in this meeting is simply to listen, and when appropriate, inform. I do not have an agenda to “sign them up” for hospice, and I think they are grateful that they are not pressured. It takes time to come to terms with the idea that a loved one is dying.

Sadly, there have been times where, by the family’s description, I can sense the patient is very close to actively dying. In some cases, I am the first one to really talk to the family about the immediacy of the situation. Usually this initial conversation happens with the family away from the patient per family choice. In these meetings, the family generally has a lot to say about the history of the patient’s decline. They may want to talk about every hospitalization and medical experience they have had over the past few years. I take the time to listen to their extended stories. Active listening involves reflective statements and acknowledgement of all that they have been through. I want them to feel they are not alone and that we will get through this experience together. I can usually tell whether they are emotionally ready for hospice if their stories thematically touch on futility and a patient’s continued decline, despite all efforts for curative treatments.

Allie: The start for an inpatient pediatric palliative care social worker is often different, less “urgent” than it can sometimes be for hospice. In the pediatric world, the inpatient medical teams often struggle with when to consult our team. With some diagnoses, we are consulted immediately because we know that the diagnosis typically causes a child to lead a shortened life span. However, with others, this can be a more nuanced discussion. The talk of the possibility of death, or even the fact that the child is “seriously ill” at the moment can be too much for some families, and even for some physicians. Many pediatric palliative care programs have chosen to change their names because of the stigma surrounding the word “palliative”.

Our team is known as the Pediatric Advanced Care Team (PACT) because we looked at studies that showed medical teams more readily referred to these teams than teams with the word palliative in their name. Often, when I introduce our team to a new family, I will make sure to explain that we are also known as the palliative care team, and to explain our definition of this term (providing added support for patients and families dealing with serious illness). Sometimes I will try to put the child’s current condition into perspective, explaining how sick s/he is in the context of the hospital. This is not to dishearten families, but rather to help them find that balance between hope for cure and acceptance of a potential reality that they may not want.

Of course, as you mention above, I tailor that initial meeting to where the family is at that moment so that I can join them there. It is crucial to convey that what they want to tell me about their child or themselves is important and that I have only a minor agenda at best. This can also present a challenge because when the diagnosis or situation is not as clear cut, we are often consulted at certain “decision-points”, times when family members have to make a choice about whether to treat a problem or not. A common example from our experiences is the decision to have a tracheostomy placed to make breathing easier. For some parents, this is a relatively clear-cut decision. The trach is intended as a short-term intervention that will help the child to breathe until s/he grows and can have it removed. For others, however, deciding to have a trach placed in their child can be the signal of a permanent decline in functioning or a change that will limit their ability to do things. Although some patients with trachs can move freely, others must remain tethered to a ventilator, which, though use of this can be taught to most parents, presents families with a huge change in their child’s and their own mobility. Although many times in these situations we have an opinion about what we might do in a similar situation, we are often reminded that we do not know the entire family context and how this decision fits into this context. We do not know the family’s belief systems, or other thoughts about morality that may steer their decision-making, so it is vital to advise and answer their questions completely, but ultimately let them know that, no matter their decision, we have their back as best we can.

Information gathering at admission

Lizzy: My role in the admission meeting is to try to build rapport with patients and families. My approach varies with every admission that I do, contingent on the situation. The exciting part of the hospice social worker job is you never know what to expect, and you need to be flexible and immediately responsive to the situation. If we are admitting someone as they are dying, I’m going to focus on the immediate needs of the patient and family. I will ask direct questions related to the family’s expectations surrounding time of death. I have found that it is helpful to know whether families wish to be present when the patient dies. If they say they do want to be there, then I provide education regarding patient choices and how the patient may pass when the family is not present. I will ask about funeral homes. I tell families they do not need to know exact arrangements, but it is helpful for them to know in advance who they are going to call “when the time comes.” With late admissions to hospice, it is common for families to say they have no idea what to do regarding funeral homes. I ask them if there are any funeral homes that they have used for other families.

For all admissions, I also try to find out the patient’s and family’s previous experiences with death and/or hospice. This informs me of their expectations. Commonly, patients and families will assume that this death will be like the others they have experienced. If they had negative experience previously with a loved one in pain, they may assume that pain is inevitable.

Finally, I aim to get to know the patient as they see themselves. I want to know what and who is foremost to them. One time I made the mistake of using a label that a daughter had provided to me. She called her dad a “biker,” but when I asked the patient about being a “biker” he became upset. He had a different vision of bikers, and did not want to identify with that subculture. That was a significant lesson for me to not necessarily adopt a family member’s visions of their loved one.

Allie: My role is very similar, and building that trust is key. Parents whose children have serious illness often have to make very difficult decisions about how their child will live or die. For many of these decisions, the outcome is unclear, so they struggle even more to know which way to go. By presenting ourselves as non-judgemental resources who will give input but will support the parents regardless of their decisions, we become that person that a parent can say something that feels awful, unspeakable, but in reality, is likely something that some other parent has said or felt before them. Permission is a big part of setting this up and something we talk about right from the start.
Also in the pediatric world, we find that not only is the family’s loss history important but so is their health history. More and more, when we talk with families about the decision to have their child get a tracheostomy, they have had some experience with someone they know who has had a trach. This can create problems, if for example, this was a scary experience for them when they were a child, or perhaps a negative experience but the medical technology has vastly improved with time. However, it can also be helpful for family members to know what they are in for with a certain decision.

Building rapport

Lizzy: My approach with patients and families is to present as open, interested and caring. I try to have 100% focus on the present moment. There have been admission visits with one patient and there have been admissions with 10 family members watching the discussion. I am an extrovert and I think that might help me be comfortable with meeting new people. Another trait that is helpful is to come across as non-judgmental. Social workers see all kinds of living situations and family dynamics. Sometimes we’ll observe that a family member feels guilty for how often they visit (or don’t visit). I spend a lot of time normalizing feelings that patients and families have.

Allie: Yes, being non-judgemental about social and family situations are also important. One of the roles I see as my job is to understand the context in which this family is operating. Who in the family is working and what does their money go to? Who makes decisions? Who provides emotional support? Who is the spiritual rock? As an adult with several unique family dynamics in my own life, I think this helps me remember that family is what you make it, and by understanding what they have made their family, I can help others understand why they may not make the choices we think they should, such as “not visiting enough” or “not getting enough sleep”. Unlike you, I am an introvert, so my style might be a bit quieter, but I do have dimples and smile often, so that helps get my foot in the door sometimes. I often will break the ice with an observation about the patient or a sibling, which helps show that interest that you mentioned. There are families that I meet with who are also introverts, and this can be a bit awkward, but I just figure if I keep asking questions, I will eventually land on a topic of interest for someone in the room and we can go from there.

Note: If there is a topic that you would like Allie and Lizzy to cover in their articles, please do send us a note

Click here for more Pallimed posts about social work.

Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. You can find her on Twitter @alifrumcally.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio at Greystone Hospice. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

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by Joel Topf, MD

Have you ever read a journal article and as soon as you finished the abstract you had this forbidding feeling that if the authors actually proved what they claimed to have discovered your medical life will never be the same?

This happened to me when I read, “Functional Status of Elderly Adults before and after Initiation of Dialysis (OPEN ACCESS)” by Tamura et al. in 2009.

This study simply looked at the mortality and functional status of nursing home residents who initiated dialysis. The cohort consisted of 3,704 Americans. The average age of this predominantly white (64%) female (60%) cohort was 74 years. The outcomes were horrifying:

• Within three months of starting dialysis 61% had died or had a decrease in their functional status
• By one year that figure was 87%
• By one year only 1 in 8 patients had maintained their functional status from before dialysis

While this study did not track patients who deferred dialysis it is hard to imagine they could do much worse. The view of dialysis as a way to improve functional status by clearing uremia leading to improved nutrition and other downstream benefits was revealed to be a false hope. Instead we have a treatment that appears to be too rough for frail, at-risk patients and left them significantly worse than they were before dialysis.

The discussion section of the article had a sentence that should be embroidered to every nephrologists white coat:

“...kidney failure may be a reflection of terminal multiorgan dysfunction rather than a primary cause of functional decline, and thus the initiation of dialysis may not rescue patients from an inevitable decline.”

As nephrologists we need to elevate conservative, non-dialytic, therapy to be a clear option for patients, one that should be discussed along with peritoneal dialysis and transplant. Conservative care should not merely be a last resort when all other options have been exhausted.

I hope you will join us as we discuss the intersection of nephrology and palliative care this Wednesday at #hpm chat.

Dr. Joel Topf is a nephorologist who writes at Precious Body Fluids and is a leading social media ambassador in nephrology circles. You can find him on Twitter @kidney_boy. 

What: #hpm chat on Twitter
When: Wed 3/4/2015 - 9p ET/ 6p PT
Host: Joel Topf Follow @kidney_boy
Facebook Event Listing: https://www.facebook.com/events/1413176172311690

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using nurph.com, for ease of following.

We will be posting the transcript and analytics here after the chat takes place. Chat Transcript and Chat Analytics courtesy of @Symplur

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by Jeannette Ross, MD

2014 a very special thanksgiving Chica and the whole family

This blog post is part of the world series of blogs and was posted first in Geripal. 

On a regular basis I am meeting with patients and families at crucial times of their lives and helping them make decisions. So far I had been very fortunate that nothing really serious had happened to anyone in my family. In August of 2014 my mother in-law “Chica” was diagnosed with laryngeal cancer, she subsequently had a total laryngectomy and reconstruction of the larynx in September which included a 4 week long hospital stay (due to some complications and wound healing issues) and another 11 days in rehabilitation.

The following are the lessons learned from my experience as one of several caregivers helping with my mother in law’s care while continuing my typical duties as a mother, wife, and physician. In the spirit of the baseball World Series here are nine innings worth of lessons:

1. Meet with your loved ones and know their wishes, and health information

Even though I have been part of the family for 15 years I really did not know enough details of Chicas health until she asked me to be her alternate medical power of attorney last summer. We had “the talk” in which I was able to get a good feeling for what made life worthwhile living and what was important to Chica. I started a list of all her medical problems, surgeries, allergies, medications, names and contact information of physicians and pharmacies.

We always carried copies of the list and brought it to appointments and when checking in the hospital for surgery. It was all different medical records at the ENT-oncologist, Plastic surgeon, cardiologist, primary care and endocrinologists and the list always proved very helpful. It makes a lot easier to write see the attached list on the forms, or pass it on to the person inputting the information in the computer.

If you are thinking of changing your documents don’t put it off, before it becomes an emergency. Chica had considered changing her will for several months and in addition of the shock of learning she had cancer it became a relative emergency to contact her lawyer and change her will and other pertinent documents.

2. You are only ready to hear so much

Chica usually went by herself to appointments, however coincidentally she was accompanied by one of her sons and family the day the ENT delivered the news she had cancer. Her doctor was very kind to in addition give my husband and me a call to explain to us the physician family members what the diagnosis and plans were. Having been so many times in the bearing side of the news I was a little stunned to be on the receiving side of the bad news. Subsequently several of us accompanied Chica to these initial appointments with the specialists performing her surgery.

Having several people made it easier for all of us to understand the proposed procedure and ask questions about what to expect about recovery and what life would be like. It seemed that even though the physicians were doing a great job explaining the planned procedures, It was a good thing to have several people there because we all remembered different aspects of the conversation and asked different questions.

3. Social Media can be a good source of support and to get information.

Facebook 
One of the first things I did was to join a couple of the available support groups for Laryngectomees (Lary’s) in Facebook. Some groups were closed and I requested membership. Once I joined I described that I was there as a family member of a laryngectomee. The Strictly Speaking administrator and other members warmly welcomed me and encouraged to ask questions to the group. They suggested I look at the website WebWhispers.org which turned up being very useful because there was a great wealth of resources including instructions for care after laryngectomy, suppliers, tips for humidifying air, getting a bracelet, getting a TTY telephone etc.

I like being in the group because people will pose questions and the others in the group will make helpful suggestions to the questions. I feel comforted that I could ask questions to the group if I need to.

From the  Laryngectomy Care Club group I found posts from a doctor who wrote a guide to living after a laryngectomy. He is a pediatrician and he had a laryngectomy

• The Laryngectomee Guide [Kindle Edition] By: Itzhak Brook M.D (to download a free PDF of the Laryngectomee guide click this link)

I also read his other book in the kindle app that talks about his experience with laryngeal cancer (My Voice: A Physician's Personal Experience With Throat Cancer). I was reading this one while I was accompanying Chica a few days after her laryngectomee. He highlighted some of the challenges he had while in the hospital and medical errors. We followed some of his strategies like writing down the questions for the doctors ahead of time.

Youtube 

• Communication after laryngectomy.mov: it is brief and a bit humorous at times, these laryngectomee persons highlight the challenges of having had a laryngectomy. Chica and I had a good laugh watching this while learning useful information.
• Total Laryngectomy education:  Patients and physicians at The University of Kansas Department of Otolaryngology discuss expectations and experiences for patients and families planning for a total laryngectomy. Very detailed and it was perfect when I was trying to absorb as much information as I could in a short time. 
• How to provide emergency care to Neck Breathers: I can’t believe that in as many times that I have taken the basic life support and the advanced cardiac life support course (at least 10 times) I have never once been instructed on the basics to assist a laryngectomee or other neck breather experiencing breathing difficulties. Dr Itzhak Brook has a detailed video on how to do it. 
• How to use a PEG tube: There were many videos out there of people showing how to do this. I made playlist of the ones I found useful. As a physician I have many time written orders to administer medications and feeds via PEG. Getting to administer them was a little intimidating and stressful at first. We had complications with the feeding tube getting clogged up and were very glad to have the home health nurse come and troubleshoot it for us. Just reinforces to me how amazing nurses are! 

4. Advocacy

As a family member you are the biggest advocate for your loved one. One day as I was leaving to the hospital my husband said “don’t be too tough of the doctors and nurses” I told him that if Chica was in pain I was going to be tough. As family member we were on top of calling the nurses for suctioning, assistance with pain, anxiety, etc. With some complications during the hospitalizations we sometimes ended up changing floors and rooms, and while the major issues were addressed like breathing and heart rhythm problems, sometimes other details got missed on like when the last bowel movement was. Honestly if I was in charge of the hospital I would make sure everyone got asked about their bowels daily. I would also give patients the option of waving a flag like this one:


Ok I admit that I saw this flag at the Austin City Limits festival and have been waiting months for the opportunity to use it.

5. Use of Technology to communicate

It was very challenging for Chica to communicate at first. She had her larynx removed so she couldn’t talk and she had her right arm in a cast and immobilized because that had been the site from where muscle had been removed, she also couldn’t start using an electrolarynx right away while her tissues healed. So essentially she was left with the non-verbal language and using her non-dominant left hand to communicate.

• Ipad apps: 
• We tried the free version of the verbally app which had several common words you could click on. Unfortunately with the free version you cannot customize phrases and the paid version is very expensive $99. The main reason this app didn’t work for Chica is that the text was too small in the ipad mini for her to read. 
• TouchVoice: this app had very big letters that were easy to use and also had many useful short phrases to click on. It was $20 but it ended up being worth every penny. I think this app would be very useful for any other with speech impairments like from stroke or ALS. 
• TTY telephone: It took a very long time to get a TTY telephone from the state of Texas. When it finally came it was not as easy to use as Chica needed to use one hand for the head set and type with just one hand. But it is nice to know you have an option to communicate. 
• Apple FaceTime: This has worked nicely as it is as close to talking to Chica in person and we get to see her lips moving and some other non-verbal language and it is relatively easy for her to use. 
• Electrolarynx: Because of previous scarring from radiation therapy and the skin grafts Chica has to use an electrolarynx with an oral adaptor. It was very frustrating at firs for her to get words out as it requires for you to exaggerate your mouth movements 
• Good old pen and paper: what can I say you just write what you need. At first this wasn’t an option because of the 3 weeks Chica had her right arm in a cast. 

6. Caregiving sandwich, learning to say No! And letting go 

I am also the parent of a high school freshman and a 4th grader and found myself just barely getting everything done. I usually like to feel like a very bold an empowered woman who can do it all. I had to get better about saying NO this is interesting but I can’t do that at this time! I also had to let go of things that are usually somewhat important to me like making the bed. And yes we ended up eating a lot of to go food but so what! Don’t judge me.

I also learned to ask for help. My colleagues were wonderful in helping with some of my duties of clinical coverage so that I could take 1-2 days during the week to be with Chica at the hospital.

7. Caregiver as a cheerleader

Rehabilitation is hard and without loved ones cheering you on it would be easy to just do nothing. When you are so worn out and deconditioned from a prolonged hospital stay even small things like getting out of bed and walking within the hospital room seem to be big chores. Chica’s three occupational therapy objectives were seemingly simple #1 to go to the bathroom by myself  #2 to take a shower by myself and #3 to go home to Rockport. The objectives #1 and #2 were achieved prior to leaving rehab, #3 took a few months but she did it!

Chica said she felt very encouraged when we were there being supportive and cheering her, like when we asked her to get out of the room and walk to the nurses station and then clapped and celebrated with her when she actually did. As a family we got organized to take turns so that Chica would have a companion every day in the hospital. Some of my family members had to use the FMLA benefit at their work.

8. Live where you are happy

Initially when we had met with the ENT we asked about his thoughts of Chica returning to live by herself after having a laryngectomy. He said he would not recommended. Thinking about not living on her own was very disturbing to Chica and she struggled with it but made peace of the idea of having to sell the house and relocating closer to family in San Antonio. The whole rehabilitation process was very long and she temporarily moved in with one of her daughters. However after a few months she went back home to Rockport and had a person who had been housesitting stay with her. She was very happy to be back with all her friends. Her friends were patient in trying to understand her using her electrolarynx or even writing like in a loud restaurant. Eventually Chica decided to stay put living on her own. We knew this may not be as safe as having her closer where we could help but living on her own was definitely was the happier option.



9. Crazy and hectic times can be good!

In the middle of all the craziness these were both the best and the worst of times. Here are some examples of touching moments:

• Seeing Chica saying goodbye to her brother right before surgery and telling him “you are the best brother ever and I love you!
• Joining hands and praying together as a family for Chica’s healing and for the health care professionals caring for her.
• All the family in the waiting room while Chica was undergoing her 7 hour surgery.
• We are closer and spend more time together as a family.
• Hearing Chica one of the first times use the electrolarynx to say “Hello everyone I love you” and saying to her ENT “thank you for saving my life.”
• Chica has new heroes: many doctors but in particular her ENT who took the cancer out and the cardiologist who had to cardiovert her after going into atrial fibrillation. The nurses who were always so kind and supportive. The chaplain and priests who prayed with her and help her lift her spirits.
• Greater appreciation for the simple things in life! Breathing through your nose, speaking, eating, going to the bathroom, all this things that we give for granted all the time

Dr Jeanette Ross is a Geriatrician and palliative medicine specialist in San Antonio. You can find her on Twitter @rossjeanette

Photos credit: David Ross

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by Holly Yang, MD

I was issued the Thickened Liquid Challenge by Dr. Christian Sinclair. I had resigned myself to the knowledge that I would not escape it the minute I saw it on GeriPal. I somehow had avoided the ice bucket version, so I figured it was my turn. On the upside, it gave me a chance to test a hypothesis that I've been considering for a while.

So, I have been espousing this theory that people are texture people or taste people. Some people can't eat the tops of asparagus because the texture weirds them out. Those people probably can't eat raw oysters, and definitely won't like most things I drank in the thickened liquid challenge. So, I decided to film a mini-documentary of my not-at-all-scientific test of this theory, one minute for each hour.

So, if you watched it, you were able to see the results of my experiment, and you know the final outcome. Here's a quick summary slide.



I also wanted to pass on a few things I learned along the way.

1) There are naturally thicker beverages I enjoy that I drink now. God forbid I have trouble with dysphagia in the future, I will likely stick to those things. Why not recommend some of these things to our patients?

2) Some things that I thought would be awful, were actually okay, not great, but okay. (Well, for me anyway.)

3) Some things that I thought would be okay, were really, really not.

4) Don't give your spouse the "not now" look when he tries to make filming recommendations, or he may keep his mouth shut about taking it easy with the thickener too.

5) Patience is a virtue, and may help you avoid unpleasant things. Give the thickener time or everything becomes pudding thick either in the glass or in your stomach. (See #4)

6) Thickened liquids can make you feel really full. (See #5)

7) Thickened liquids may be able to hydrate you, as perplexing as that seems while you are "drinking" them, but they make your mouth really dry. Good oral care is going to be necessary for your patients.

8) If you drink a frozen frappucino too quickly in order to keep it "honey thick" consistency, it will most definitely give you an ice-cream headache to replace your caffeine-withdrawal headache.

9) Bananas = #thickenedliquidhack

10) Carbonated beverages get crazy bubbly with thickener added. Not Mentos bubbly, but more like root beer float bubbly.

11) We should think twice before asking patients to do things we aren't willing to do ourselves. Certainly not things that we make "yuck faces" at and giggle about. Not cool, Robert Frost!

12) Add ice cubes AFTER thickener when drinking scotch.

Unanswered questions:

1) How do you brush your teeth on a thickened liquid restriction?

2) Does Fitbit have a calorie count for thickener?

3) Exactly when does a liquid become a solid?

Thanks for watching, and thanks for reading.

If you haven't been nominated for the challenge, nominate yourself, and then a few of your best friends, frienemies, or that person at work that bugs you. Or... hope and pray that no one calls you out.

Seriously though, I think we should know what we are asking our patients and families to do, put ourselves at their place at the table instead of labeling them "noncompliant," work on shared decision making with real information (see GeriPal post), and help them incorporate what ever the decision is in the tastiest way possible with our nutrition and speech and language pathology colleagues as partners (See posts here and here).

Cheers!

Holly Yang is a Hospice and Palliative Medicine doc practicing at Scripps Health in San Diego, with a particular love for medical education, especially the communication, international, and moving the field forward bits. She is also fascinated by the intersections of #hpm, humanities, and spirituality. Holly surfs whenever she can, and has a bit of an obsession with Kansas City barbecue.

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Empathy via participation is a technique that probably deserves wider attention in health professions education. Drs Eric Widera and Alex Smith and the team at UCSF have come up with the ingenious Thickened Liquids Challenge. Thickened liquids can be a treatment that is overly used and poorly understood for any person who has swallowing difficulties. Most clinicians will be familiar with the terms ‘nectar-thickened’ and ‘honey-thickened’ from any experience in geriatrics or neurology. So taking the popularity of the ALS Ice Bucket Challenge and mashing it up with a likely non-harmful* experiential opportunity for the clinician to “take their own medicine,” we have the Thickened Liquids Challenge. The rules are thus:

• 12 Hour Challenge: All fluids must be thickened to “honey consistency” using a beverage thickener for a 12 hour contiguous period. Food does not have to be thickened.
• Mini-challenge: drink an 8 ounce drink thickened to honey consistency (coffee, wine, juice, water, or any drink of your choice)
• Videotape yourself and include an announcement that you accept the challenge
• If you fail the challenge you must donate $20 to a geriatrics or palliative care charity of your choice (see notes below for some suggestions)
• At the end of your challenge, nominate a minimum of three other people/teams to participate in the challenge
• When posting the challenge online, please use the hashtag #thickenedliquidchallenge

@ctsinclair Do you accept the challenge? #thickenedliquidchallenge http://t.co/RNmVEdapx2 #hpm
— Eric Widera, MD (@EWidera) January 20, 2015

So I was challenged last week by Eric. I took that challenge and here is my video of the 12 hour experience condensed down to 4 minutes.


As you can see I could not last that 12 hours. But it wasn't the gross factor that got to me, it was plain thirst. Thirst for cold thin runny liquids that the thickened stuff just wasn't satisfying. Actually the nectar-thickened pre-mixed apple juice was not bad at all. I just thought of it like an apple smoothie, and really didn't have any problems.

I did learn a few things along the way:

• Your local speech therapist/speech pathologist may have some samples to share with you
• You have to stir a lot of thickener to get to the right consistency
• They do not sell thickener at WalMart - but it is on Amazon
• Clean up any thickened liquid you spill. It hardened like cement on my counter tops the next morning
• That liquid cement you just drank, well...let’s say a few days later, I had some work to do (thus the asterisk above about non-harmful)
• Making a video about this was actually fun and allowed me to feel creative (self-care for the week - CHECK!)
• Orange juice and BBQ do not go together well - thickened or not
• Pre-thickened and nectar consistency were very tolerable
• Mixing the thickener before I could drink was frustrating and made me feel more thirsty
• Your mindset towards thickened liquids is important to tolerating them
• Speech therapists do not universally love thickened liquids, in fact they may be concerned doctors rely too much on them. 
• It is better to work with rather than against speech therapy 

I nominated a few people but I do encourage anyone who reads this to nominate themselves and give it a try. And then to post a video! We will happily host videos as will GeriPal if you don’t have a YouTube channel.

The posting is the important part! Participation and public sharing make this different than all of the people I told about this, who said, “Oh yeah, I did that when I was a (nurse/medical/speech) student.” Yet without sharing that experience more widely we miss out as healthcare professionals to do some education to our peers and the public. So I hope many of you will take this up and give the Thickened Liquid Challenge a try!

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center and editor of Pallimed. When not advocating for health care professionals to use social media you can find him playing board games.

Image Credit: "Thickened Liquid" Christian Sinclair for Pallimed, licensed via CC BY NC-SA 4.0

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At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population. These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss their wish lists for additional research to support their respective social work practices. This article is the second article in a series of planned joint conversations into these populations. (See post #1 here)

Where are the gaps in the literature for social workers?

Allie: Although there is some great writing out there in the field of hospice and palliative care (HPC) social work (The Journal of Social Work in Palliative and End of Life Care, for example), there are still large gaps that exist in the HPC social work literature. First off, there is very little in the way of research on measurable outcomes in psychosocial palliative and hospice care specifically. There is research into this work with specific illnesses (i.e. cancer), or in grief work, but there is still a long way to go in proving that what social workers do with their patients has a positive impact.

Along these lines, there is a lack of information about specific interventions or methods that we can use in addressing psychosocial issues in hospice and palliative care. For example, an article might discuss a theory (such as Family Systems) and/or an approach (maybe Cognitive Behavioral Therapy – CBT), but what still needs to be written is what CBT techniques need to be applied and how these apply theory to practice.

In the coming years, I hope to see more written about specific tools that social workers, especially those new to the field, can use in their practices.

Lizzy: I agree wholeheartedly. In school, we talked a lot about bridging research and practice, but I believe the research side needs to help build the bridge a little more. There are many more practical resources and interventions available for bereavement in the research than for the dying process.

I have a wish list of common hospice situations where I would like more ideas for interventions. In these situations basic social work techniques apply, but I would love for someone to tackle the topics directly and offer techniques or tools specifically addressing these challenges.

• Hospice patients with dementia who have an apparent trauma history
• Reluctant caregivers (especially adult children who feel forced into the role)
• When it’s too late for patient to get POA (i.e. patient has dementia) and the natural caregiver is not the legal next of kin

Research Inspired Practice

We would be remiss to have an article about the gaps in the literature without acknowledging our favorite pieces.

Allie: My general approach to working with the anticipatory grief and the grief for the losses that our families face through the illness process often ties into the Dual Process Model of Coping with Bereavement (DPM) initially introduced by Margaret Strobe and Henk Schut. Although there are many articles that describe this model, the journal Omega put out a 2010 issue re-examining this model after a decade of publication, including research into effectiveness of interventions that utilize DPM.

The DPM operates on the principle that adaptive coping involves both confronting the reality of a loss, accepting it as it were, and participating in “restoration-oriented” tasks. They noted that those who seemed to have the least mal-adaptive coping strategies seemed to oscillate back and forth between the loss-oriented tasks (such as grief work) and the restoration-oriented tasks of adapting to a new normal. Although the authors point out that this is not a universal way of grieving that all should participate in, what I like about it is that it takes into account that people can be in many different places all at the same time. I also like the idea of creating a new baseline for life that has room for the person (or skill) that is lost. Similar to Dennis Klass and Tony Walter’s idea of Continuing Bonds, the DPM allows room for the who or what that is lost to still be a part of the griever’s life, just in a new way. However, unlike Continuing Bonds, it also allows for space in the griever’s life without the loss.

Lizzy: The research that I use most often in my day to day work is Harvey Chochinov’s research on Dignity Therapy. Not to be confused with the “death with dignity” physician assisted suicide (PAS) movement, Dignity Therapy is a series of interventions designed to relieve existential distress at end of life. Dignity Therapy starts with one basic Patient Dignity Question (PDQ), “What do I need to know about you as a person to give you the best care possible?". I ask that question at every hospice admission I do. This question can help identify patient stressors. Now I must admit, sometimes the patient responses are unexpected. “I like basketball,” for example.

Beyond the initial question, there is a short Patient Dignity Inventory (PDI) that helps to identify twenty different ways that a patient might experience existential distress, from illness related concerns to role preservation. The research provides further exploratory questions such as "What things did you do before you were sick that were most important to you?" that can be asked of the patient and then suggests multiple interventions for each concern.

Hospice and palliative care researchers who want practitioners to apply their research would do well to model the resources that Chochinov’s research provides practitioners.

Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. You can find her on Twitter @alifrumcally

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

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(Note: we have a short poll about your thoughts on this show. It doesn't matter if you have seen it or not. Let us know what you think - Ed.)


by Chris Okon

"Getting On" is an HBO series about the daily and often absurd experiences of nurses, doctors, attendants, and patients in the "Billy Barnes" extended care wing of the fictional Mt. Palms hospital in southern California. ​Some viewers may be offended by the gallows humor that threads through each scenario, and so viewer discretion is advised. For others who don't mind, and in fact appreciate, the dark humor that's possible with any human interaction, be prepared for sudden bouts of the laughter of recognition.

While trying to sustain some level of compassion for the elderly, frail and sometimes dying patients, the overworked clinicians and staff must work under the knuckles of a red-taped hospital administration which in turn is squeezed by the larger powers-that-be of a broken and somewhat Kafkaesque healthcare system, CMS/Medicare, digital technology, hospice service salespeople, and other monkey wrenches.

Add the personal goals, quirks and challenges of each character and you get unexpected and hilarious situations that may ring very true for those involved in palliative care, long-term care, and hospice.

For example, floor nurse Dawn Forchette (Alex Borstein) knows her profession well but is insecure and so hungry for love that she foists a zero-to-sixty commitment on the unwitting supervising nurse Patsy de La Serda (Mel Rodriguez) who is still in the dark about his own sexual preferences.

​
Nurse DiDi (Niecy Nash) is probably the most likable and steady character, keeping a level head and caring compassion while navigating the chaos of quirky protocols, emotional meltdowns of coworkers, and the overarching bureacracy. In once scene, DiDi lets the family enter the room of the mother who just died. "Take as long as you want," DiDi says, quickly followed by Dawn's whisper of "we actually need that bed by 11."


The frazzled department lead Dr. Jenna James (Laurie Metcalf​), in denial that she has reached a career dead-end, still clings to the dream of producing groundbreaking research about fecal anomalies, so much so that she chastises a nurse for removing a critical study sample of "feces, not a turd" left on a chair by one of the more impish dementia patients.


Several ancillary characters add depth, such as the sweet and eager hospice volunteer; the mixed batch of ornery, sweet, or just plain vacant patients; the ingratiating saleswoman for a profit-driven hospice care enterprise; the steady stream of various family members who argue, compete, cajole, or cry over the mother, father, sister, in the hospital bed.

Based on the BBC series of the same name, the American version of Getting On just completed its second season but can be viewed on HBO or HBO Go. ​Start from the beginning with Season 1 to see how character dynamics are established, although any episode presents hilarious and familiar situations.

(Note: we have a short poll about your thoughts on this show. It doesn't matter if you have seen it or not. Let us know what you think - Ed.)

Season 1 Trailer


Season 2 Trailer


As a volunteer with Hospice by the Bay, ​Christine Okon​ offered ​gentle bodywork to many people at the end of life, feeling privileged to hear their stories. She learned much from Les Morgan who founded Growth House, ahead of its time for using technology to build a social network for those involved with EOL. Christine lives in San Francisco and works for Kaiser Permanente on the patient safety aspects of their EHR.

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A Conversation between Two Specialists

by Allie Shukraft and Lizzy Miles

At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population.  These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss some of the differences and similarities between these two seemingly divergent specialty populations. Allie and Lizzy also describe their social worker roles as they relate to their patient groups.

This article about Developmental Life Cycles is the first article in a series of planned joint conversations into these populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions)

Allie: For children, developmental stages are different than adults, but basic needs are the same. There is a wide range in understanding and experience in pediatrics, and this can impact the tasks and goals that the family chooses to strive for. However, the needs are much the same as those of any age: to be loved, to have understanding, and to be unafraid. Luckily, most children have their parents and siblings, if not a floor full of caring staff-members throughout their palliative course.

Lizzy: I agree with the "needs" for any age. I do think that applies to my patients as well. As far as development cycles go, gerontology is a newer area of study than pediatrics. In gerontology, developmental cycles are not as clearly defined as they are with children. You could ask five different experts and get five different answers. We don’t categorize our patients by age because our clients do not use their age to define themselves. My favorite intervention with elders is Dignity Therapy, developed by Harvey Chochinov. The premise is simple: to see patients as they see themselves. Our patients don't see themselves as infirm, they remember when they rode motorcycles or traveled to some foreign country at the drop of a hat. Their approach to their dying is going to be less about their age and more about their general philosophy towards life.

The best thing we can do for our gerontology clients is to get to know them and have them feel that we "know" them as well.

Could you give me some examples of how your approach might differ based on developmental cycle for children?

Allie: Well, children are going to differ greatly in their own view of death. Some of this will be along developmental lines, and some on experiential lines. If the child has already experienced a death, such as a pet or a family member, for example, this loss can color how the child views death and the words that he uses to describe it. At various stages, the concept may be too abstract for them to fully comprehend, or may include magical thinking to explain concepts beyond their understanding. There are some great resources out there for more specific information, such as The Dougy Center, which has a list of stages and understanding.  When looking at the child’s own death, there is often a great deal of fear especially if the family won’t talk about it. Here children might express a desire to stay awake out of fear they will die in their sleep, or an unwillingness to be separated from their parents.

The social worker’s role is to try to get everyone in the family talking honestly about death so that the child can express and worries or fears that he may have and the team, particularly the parents, can talk about how to address these issues. One approach for a 9-year-old, for example, might be to try to get him to talk about what death is and why he thinks he is dying. Developmentally he is starting to have a concrete understanding the permanence of death but is likely to have fears about death being something painful or that will involve harm to his body. Talking through what we know will happen and what we hope will happen allows us to combine the medical with the metaphysical and bring in his parents’ (or his own) spirituality and belief systems.

​Lizzy: I'm glad you brought up spirituality because a person's spirituality (or non-belief) can definitely be an influential factor on their views of dying. While not directly tied to a developmental stage, my experience has shown that the older the client is, the more likely they are to have a strong religious orientation and/or church affiliation. A belief in heaven does not necessarily mean a greater acceptance of death though. Also, we still need to assess spirituality and not make assumptions, because I have seen 99 year old non-believers too.

When I think about the different generations within gerontology and approach towards death, I would also want to acknowledge that an older age does not guarantee an acceptance of death. The process of dying can still be a scary concept ever for elders who have lived a long life and have a strong "faith."

You mentioned previous experiences with death. I always ask my hospice patients what experience they have had with other people dying, especially looking for firsthand bedside experience. If the patient had been bedside and it was a peaceful moment with their loved one, they may be less afraid. If they have not had experience, then I can share with them my own assurances from my work at the bedside. My role is to provide assurance that we will control symptoms and that a peaceful death is possible.

Allie: When looking at a pediatric death, we are also fortunate on the inpatient side to (typically) have access to certified child life specialists (CCLS) who have education in childhood development, medical play and education, and legacy-building. Using these skills they take the lead in memory-making for the child and family, helping the child to make gifts for his or her family such as hand molds or footprints.  Some even write songs as part of their legacy with our music therapist.  In this way, although they have less life to review that adult patients, they are still able to leave an indelible mark for their families that keeps their stories going.

Read more posts about social work on Pallimed here.

Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. Although she is still learning how to use it, you can find her on Twitter (@alifrumcally).

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW
Photo Credit: cabancreative via Compfight cc

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What bird is with you at every meal? A swallow!

By Alex Smith @AlexSmithMD and Sarah Stranberg, Speech Pathologist, University of Pittsburgh Medical Center

Consider the following vignettes, common in both geriatrics and palliative care:

1. A 93 year old woman with advanced dementia is admitted to the hospital for the third time in the past 6 months for an aspiration pneumonia. The admitting team orders a speech and swallow consult.
2. A 68 year old man suffers a massive ischemic stroke. After 15 days in the ICU he has recovered minimal function. A tracheostomy (trach) is placed so that he can breathe on a ventilator through a hole in his neck. The neurology team requests a speech and swallow consult to justify likely need for PEG (a hole into the stomach for artificial feeding through a tube).

In each of these cases, my initial reaction has always been “Noooooooooooooooooo!!!!! Don’t place the speech and swallow consult!” I worry that the consult will place the patient on an inevitable path toward a PEG tube, without assessment of goals, values, and alternative approaches such as hand feeding.

However, at the annual Foley retreat of the National Palliative Care Research Center , Bob Arnold suggested a different approach. He has been working with his speech and swallow colleagues to develop a palliative approach to patients with difficulty swallowing.

Here are some of the changes:

Old speech and swallow recommendations:

• Unsafe for feeding
• NPO. Needs feeding tube

New speech and swallow recommendations:

• High risk for aspiration
• Assess goals and values related to feeding and nutrition

This is a great idea, and something we should try more broadly around the country. For more detail, attend the workshop at the HPNA/AAHPM Annual Assembly on “palliative dysphagia” Saturday at 1:15.

Alex Smith normally blogs at GeriPal. This post appears first on Pallimed as part of a wager on the World Series. For each game lost by the home team (SF Giants for GeriPal, KC Royals for Pallimed), the losing blog must submit a post to the winning blog.

Photo Credit: jurvetson via Compfight cc

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I have a 1 in 542 chance of dying in the next year. In other words, for every 542 men who are the same age as me, one will die in 2012. For those of us who survive until 2017, the probability of death during that year will be 1 in 364. This probability will increase fairly predictably over the years. Gompertz Law of human mortality suggests that the rate doubles every eight years. Supposedly, this law stands the test of time and across populations.

Source: Meandering Through Mathematics

And if you live long enough, you'll likely develop a chronic disease. People are remarkably resilient and can adjust, so don't worry about this too much. With illness, you'll likely develop a greater awareness of your own mortality. Hopefully, you've prepared. If not, it's never too late.

But you'll go to your doctor with the expectation that he'll help improve your quality of life in the face of the chronic disease and also that he'll know what to do to help you avoid death. You've seen the ads on TV for such and such a pill which will improve your vigor. You'll look ten years younger than the average person with your condition, be able to win the stuffed animal for your grandkid, and the lights will go off in your bedroom a full 30-45 minutes before you plan on going to sleep. You imagine it to be so perfect that if a life-threatening condition arises and your doctor doesn't have a pill to fix the problem, you'll think, "This is the year 20XX, why don't they have a pill for this?"

This is the generic frame for the typical clinic visit for patients in the early 21st century. You know that doctors can't fix everything. Your doctor knows she can't fix everything. Both facts frequently go unspoken between the four walls of the clinic room as both sides labor to prevent a "premature" death. It's a noble and worthy goal but Gompertz Law remains. It occasionally crosses your mind: What would it be like to get sick, what type of interventions will you have to go through, what will happen if you become ill and don't have enough support to remain at home? It's crossed your doctor's mind, too. She's seen others go through it, but it's easier to talk about A1C's, LDL's, and holiday plans so concerns go unspoken. Advance care planning in the office remains challenging for multiple reasons, but the frame of the visit does not easily permit acknowledgement of death or other difficult outcomes.

It's always appropriate to prepare for multiple scenarios. Explicit discussion of prognosis, while not an absolute prerequisite, can serve as an entree to discuss the possible scenarios. The healthy young man looks at his probability of death and buys life insurance but prepares at the same time for life as a 50, 60, and 70 year old. In old age, it's still appropriate to prepare for multiple scenarios. If you are an 80 year old with a Mazzaglia Index score is 3, then you have an 8% chance of dying in the next 15 months and a 30% risk of being hospitalized, it makes sense to do some preparation for those events. However, you also have a 92% chance of NOT dying in the next 15 months. What then? What will it take for you to age in place? What happens if frailty or other circumstances make this impossible? Prepare for the most likely and worst case scenarios. It should be your expectation that your healthcare team can help you prepare.

In the JAMA article, the authors suggest using the indices to guide discussions about preventative care (such as whether to pursue a screening colonoscopy in a woman with advanced COPD and comorbidities). This use of the indices makes sense. Colonoscopy, while generally safe, is not without risk of complications, especially in older adults with comorbidities. It's appropriate for physicians to use the indices along with their clinical judgment to guide their recommendations. This has brought about accusations of bedside rationing, which is really a separate discussion. Medicare covers screening colonoscopy once every ten years. I wouldn't anticipate physicians refusing to order a colonoscopy for a non-terminally ill elderly patient based on a prognostic score.

It remains to be seen whether ePrognosis will increase awareness of prognosis in non-terminal, older adults or whether this will impact clinical decisions. I think it will. Time will tell.

(See also this recent NEJM perspective piece and related Geripal commentary.)