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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 Lizzy Miles (@lizzymiles_MSW)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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by Lizzy Miles

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

It was a patient who helped me make the connection.

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

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

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

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

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

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

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

John told us that he had studied ninjutsu.

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

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

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

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

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

Here are the gems I found:

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

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

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

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

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

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

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

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

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

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

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by Lizzy Miles

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

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

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

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

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

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

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

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

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

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

At this point, John rolled his eyes.

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

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

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

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

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

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

For the patient who wants control:

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

For the patient who is tired of decisions:

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



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


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

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by Lizzy Miles (@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 Pallimed.org

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by Lizzy Miles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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by Lizzy Miles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day 2: Wednesday June 13, 2007

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

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

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

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

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

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

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

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

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

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

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

Day 3: Monday June 18, 2007

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

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

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

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

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

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

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

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Curated by Lizzy Miles

Last week, I attended the End Well Symposium in San Francisco. (You could read my review here). Collectively, we were examining how we can improve the end of life experience for all. It occurred to me as we talked about individual desire and diversity that the attendees might have unique expectations and hopes for their own personal ending. So I asked around. You'll note some trends, but also some very unique answers.

What would it mean for you personally to “end well?”

“Being present to the experience. I don’t want to control it, I just want to know.”
-Karen Van Dyke
Senior Care by Design

“To experience the process of dying and to be aware for as long as I can without pain.”
-Heidi Burbage
San Francisco Health Network

“I feel complete in my life. I’m just starting to do my work. I would love to have what my mom had – a Living Wake. Be surrounded by loved ones at Zen Hospice. Have the song We are the World or something by Barry Manilow playing.”
-Laura Sweet
The Cancer Journey

“I am going to be buried in a green burial ground with a mushroom suit and three days vigil prior to the burial.”
Michele Little
Beautifuldying.com

“Having made all my relationships healthy and felt like I gave back to the world as much as I took from it. I would want to be in the company of the people I know and love and not in institutional setting being cared for by strangers.  I would love to hear the sound of wind and trees."
-Jennifer Brokaw, MD
Patient advocate, writer, speaker

“A conscious death with close family. Preferably when I’m over 65, even better with adult grandchildren.”
-Jethro Heiko
Co-founder of Common Practice

“A car accident where I’m pulverized.”
Sandra Price
Estate Planning Attorney
[editor’s note – yes, she understood the question!]


“I’m outside. It’s a sunny day but not hot. My entire family is there having a barbeque. There is loud, rowdy music playing. Then I slip away. I want to be fully conscious until the end.”
-Linda Siniard
ABD PhD in Transformative Studies

“My ability to welcome everything and push away nothing where my dying could be of use to others. It would be as simple as possible, ideally with the giggling of my granddaughter as my final sound.”
-Frank Ostaseski
Metta Institute

“Feeling like my relationships are in order and I’ve expressed gratitude and love to everyone in my life. I’m at peace with people and the physical place. I’m at home in my own environment and if I can’t be at home then with elements of my home. The most important thing is to feel prepared spiritually. Even if my death is unexpected and traumatic, I hope to touch that peaceful place within myself.”
-Vanessa Callison-Burch
Chaplaincy student at Upaya Zen Center

“I don’t want to die. I’m going to live in the cloud forever.”
-Andrew MacPherson
Principal at Healthsperien, LLC

“The sound of a friend of mine playing charango. The sensation of my son on one side, my daughter on another and my wife rubbing my head. Lots of laughter and crying equally balanced. We’re outside in my redwood forest.”
-Michael Fratkin, MD
ResolutionCare

“My having a good death means my identity is preserved in the way I see myself and how I want the world to see me.”
-Charlie Blotner
MSW student, University of Washington

“Close to zen-like at home surrounded by water and nature and family and friends. If I had to give up quantity to have high quality, I would happily trade months.”
-Bob Tedeschi
Stat News Journalist

“I’d like to go while I was outside on the Ko’olau Mountains. There is a place called Stairway to Heaven. If somebody could leave me out there, I’d be good. The pigs will take care of me.”
-Billy Greineisen
Director of Strategy, Cox Enterprises

“The number one thing for me to end well would be for my son to be proud of me and to feel like he felt incredibly unconditionally loved. I highly value environment. I would be at home in my lovely, warm bedroom looking out my window and it would be raining. I would be with my family and I would be happy.”
-Danny Kraus
Partner, Wellhaus Media

“I would like to live whatever length the boss has for me and go quickly. I’d like to be at home and have my two boys telling jokes so I can hear them.”
-Anil Sethi
Founder, Ciitizen

“I will be excited to release into the oneness, the emptiness of the universe.”
Michael Kersten
Hill Physician Medical Group

“It would be a shared experience between me, my caregivers and my clinical team where we would make the best decision based on my goals and values and also side effects and tradeoffs of the treatments that are available.”
-Torrie Fields
Senior Program Manager, Blue Shield of California

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:
mushroom - Igor Yemelianov
Barbeque - Andrik Langfield
Trees - Arnaud Mesureur
Stairway to Heaven - Shawn Clover