How to Talk to Your Proxy About Your Advanced Care Wishes

By Jane Baker Segelken, MA, MSW, and part of the Social Work team at Hospicare & Palliative Care Services

Jane Segelken, MA, MSW

One thing that’s important to remember when thinking about advanced care planning is that it’s not just about end of life. In reality, it’s about how you’re living now. It’s about making sure everyone is ready to make decisions on your behalf when you’re unable to communicate — even temporarily while you’re recovering from an accident, surgery, or debilitating illness.

Several years ago, 83-year-old Ella fell and severely broke her shoulder. In the hospital and loaded up on pain medication, the usually cognitively sharp Ella was unable to think clearly. She couldn’t understand the surgical options being presented to her and couldn’t communicate which surgery she preferred. Fortunately, she had talked to her legally appointed health care proxy about many different things including how important quality of life was to her. That information, including knowing something about Ella’s hobbies and interests, allowed her agent to advocate for an extensive surgery that allowed Ella to resume all her activities, including driving. Had the proxy not been informed and kept up to date on Ella’s wishes as they evolved, the proxy might have allowed the physicians to perform a lesser surgery that would have severely limited the very active Ella’s independence.

There is no question conversations about our advanced care wishes are hard. Making decisions about future scenarios isn’t easy. It’s scary for us to think about our own misery and it’s daunting for our proxy to consider our suffering. But the talks are totally worth it. In fact, doing so will minimize our distress and give our agent the confidence they are making the right decisions — some of the hardest he or she will ever have to do.

Once you’ve identified the person you want to represent your wishes — someone who can make difficult decisions, can advocate for you, and who knows your values — it’s time to have “The Talk.”

Talking about your advanced care wishes

There is never the perfect moment to begin the conversation. And it may happen over time — in several conversations rather than one. But a good way to start with the person you’ve selected as your agent is to frame it by saying, “I’d like to talk to you about how I want to live.”

  1. Be direct.
  2. Talk about a situation that someone else, such as a friend or relative, has experienced.
  3. Speak about your values — what makes your life worth living?
  4. Discuss what brings you comfort and joy — your interests, likes, and dislikes.
  5. Talk about what health, sickness, and death mean to you.
  6. Talk about pain. Do you want to be able to communicate while being treated for pain even if it means you might still be uncomfortable? Or would you rather be sedated and pain free?
  7. Consider life support treatments and reveal where your views on them come from. Share under what situations you would want to be on life support — such as a device to help you breathe, nutrition and hydration through a tube, CPR, etc. — and when you might want nothing to be done.
  8. Make sure to address your religious beliefs, if any, regarding healthcare decisions.

Part of this discussion should also address care at the end of your life. Things to consider include:

  1. Do you want a religious or spiritual leader to visit with you?
  2. Do you want music, candles, incense, and dim/bright light in the room? Specify the kind of music you like, the candle/incense aroma, and whether the light should be natural or artificial.
  3. Do you want to know when death is approaching so you can tie up loose ends and say goodbye to friends and family?
  4. Where do you want to die (hospital, hospice residence, at home, other)?
  5. Do you want to donate your organs? Are there any limitations?

As time goes by, especially if your health changes, review your advanced care planning wishes. When you’re young, every 10 years is a good benchmark. As you get older you may want to reevaluate even more frequently. Make sure your proxy, family, close friends, and your doctor know of any changes in your preferences.

Resources

The planning you do now will be a gift to your proxy, to those in your life to whom you matter, and to yourself.

Join Dr. Lucia Jander and the Hospicare & Palliative Care Services’ interdisciplinary team on March 15, from 5:30-7 for a webinar, Having the Conversations & Organizing Your Info.  To register email jennifer@crcfl.net or call 607-272-0212.

*Jane Baker Segelken, MA, MSW, is part of the Social Work team at Hospicare & Palliative Care Services.

How Patients’ Wishes Can Guide Medical Decision Making

By Jane Baker Segelken, MA, MSW, and part of the Social Work team at Hospicare & Palliative Care Services

Jane Segelken, MA, MSW

With the new year upon us, one of the kindest favors we can give the important people in our lives is information on the kind of care we wish to receive if we become ill or incapacitated. Letting them know our care plans and wishes in advance is a true act of love. Doing so takes away some of the burden and stress by allowing them to focus on us without the preoccupation of making decisions we haven’t discussed with them.

For anyone over the age of 18, advanced care planning is the process that allows us to make decisions about our future health care. It is a way of providing guidance for decisions that may have to be made when we are unable to make and/or communicate them on our own. The preferences are noted on legally recognized documents; then the choices are communicated to family/friends and health care providers who are appointed to be the decisionmakers.

While we often think about advanced care planning as part of end of life, there are times when you might be unable to make decisions because you are taking medications that make you fuzzy headed or are in severe pain that prevents you from being able to focus. Regardless of whether you are needing someone to assist in an emergency or at the end of life, having someone who knows your wishes almost guarantees you’ll be treated the way you want. Without these legal documents, decisions about your care may be made by healthcare providers who know nothing about your values.

Medical Decisions: Choosing Your Proxy and Talking About Your Wishes

When thinking about who you will have as your proxy, also known as an agent, it’s important to select someone who will honor your wishes. While many people choose a partner/spouse or child, they may not be the best ones to make the difficult decisions. What is key is that the proxy be able to determine the kind of care you receive based on your wishes not theirs. Others who can act on your behalf include a friend, lawyer, or someone in your social or spiritual community. Also, name an alternate proxy. Be sure to ask the people you want to appoint as your agents in advance to ensure they are comfortable with the process.

Make sure you have a deep, detailed, and honest conversation with your appointed agents about how you want to be cared for in a medical emergency or at the end of life. Talk about your thoughts, beliefs, and values so your agent can make the kind of decisions you would if you were able. It’s also important to talk about your decisions with your loved ones and your physicians so they can partner with your proxy. The Five Wishes and My Living Voice programs are two excellent resources to help guide you through the process.

Medical Decisions: The Documents

  • A Health Care Proxy is a legal document that designates the person who will make health care decisions only if you are unable to make them yourself. Because it is difficult to know all the choices that will need to be made, it is important to appoint someone you trust and who knows your core values; make sure he or she hears details about your wishes that go beyond what you have written on the proxy form. Keep the original at home; give copy of the completed document to your appointed agent (proxy), your alternate agent, your primary medical providers, and your attorney if you have one. While some people also prepare a Living Will, it’s important to remember that is not a legal document.
  • A Medical Orders for Life Sustaining Treatment (MOLST) form outlines your wishes for the end of life in the event you cannot make this decision yourself. This form is filled out with and signed by your physician and reviewed at least every 90 days. If you do not have a proxy, the MOLST will guide medical decisions. If you do have a proxy, this document can guide their choices on your behalf.
  • A Do Not Resuscitate Order (DNR) determines what life sustaining measures, if any, you would like if your heart has stopped beating and you are not breathing. While a DNR can stand alone, it is also a part of the more comprehensive MOLST form.

Resources

If you need help connecting to resources, or ideas for how to start this process, please contact Hospicare & Palliative Care Services at 607-272-0212 with any questions or visit their website at hospicare.org.

*This article originally appeared in the Cortland Standard on January 27, 2022, as the first of a 12 column series devoted to topics relating to hospice and Hospicare called “Let’s Talk Hospice”.


UPCOMING ADVANCED CARE PLANNING EVENT

Having the Conversations & Organizing Your Info
March 15, 5:30 – 7:00 pm via Zoom

For help with advanced care planning, attend Having the Conversations & Organizing Your Info, an upcoming webinar with Dr. Lucia Jander and the Hospicare & Palliative Care Services’ interdisciplinary team and hosted by the Cancer Resource Center. For more information about this and other event, visit our event calendar.

Training the Next Generation of Hospice-Minded Doctors

My name is Dr. Lucia Jander. I am the medical director for Hospicare & Palliative Care Services. You may know that Hospicare provides hospice, palliative care, and grief support to people living in Cortland and Tompkins counties, but did you know that we also recently started a new program training medical residents?

Since May of 2021, Hospicare has been working with Dr. Janette Lee of Cayuga Medical Center (CMC) to train a new generation of doctors in the Internal Medicine Residency program. These young doctors are doing their Geriatric Rotation at Hospicare.

Dr. Lucia Jander speaks with Dr. Priyesh Thakurathi, a CMC resident participating in the Geriatric Rotation at Hospicare.

My own professional interest in hospice came from an elective rotation in my residency. There is no formal requirement to have a hospice experience, but clearly it is very helpful for future internists in the community to understand these issues.

Let me explain the difference between hospice and palliative care: Hospice is a subset of palliative care for people who are at the end of life, generally with a 6-month prognosis. Palliative care can be delivered for several years before patients qualify for hospice. It is a special care for people with severe and chronic illnesses and can be given concurrently with curative care. The goal of palliative care is to help with symptom management, allow for open communication, and improve a patient’s quality of life.

During this semester-long rotation, CMC residents spend time in a long-term care facility, perform home hospice visits, come to our hospice residence, and are introduced to working in an interdisciplinary health care team. The goal of the rotation is to develop knowledge, skills, and the interpersonal communication needed to provide effective and compassionate care to patients receiving our services. Residents gain a broader understanding of the difference between hospice and palliative care.

During the Geriatric Rotation, CMC residents learn ways to help patients stay at home, improve their quality of life, and help them understand their illness, which may result in decreased hospitalizations or trips to the emergency room. I think it is important to remind trainees that 99% of patients’ lives are spent outside of the hospital; this may seem an obvious statement, but when residents are in the middle of their training, they are seeing the worst 1% of people’s lives when they are in crisis-medical misery. My hope is that the outpatient geriatric rotation helps CMC resident’s understand what matters most to their geriatric patients and ways to improve their quality of life.

Dr. Priyesh Thakurathi, a CMC resident meets with a patient at the Hospicare residence.

My primary goals are to teach trainees to understand their patients’ priorities (which may be vastly different from the healthcare team’s priorities) and help them recognize how much social factors influence patients’ lives – much more than our medical interventions.

CMC residents become incorporated into the Hospicare team. They join our nurses and social workers on their workday. The more exposure they have to Hospicare, the higher likelihood they will appreciate the help hospice provides for their patients, give prompt referrals for those who will benefit from hospice and palliative services, and stay in the community as primary care practitioners starting next July.

We are very glad to be able to train the next generation of doctors!

Faces of Cortland

By Barry Miller

Team Member Profile: John Hughes, RN

Job Title: Primary RN/Case Manager

Residence: Cortland

Family: Wife Liz, two children (a son who lives locally and a daughter in Norway) and three grandchildren, with one on the way.

New Beginnings on the Horizon: “A current goal is to find a place with more land and barns and get back to having horses again.”

John Hughes knows a thing or two about new beginnings. “I’m kind of all about that,” says John. “I have always thought of life as an adventure and that the only limit is our own courage and imagination.”

Take, for instance, John’s 40-plus years of professional work, in which he has been a commercial truck driver, a blacksmith, an opera singer (“Please don’t ever ask me to sing—it’s long gone!” says John), a marketing/development manager for large hospital systems, a nursing home administrator, a manager for 55 skilled-nursing and assisted-living facilities, an owner/operator of a national firm providing clinical and operational consulting services to over 300 health care organizations in 30 states, and an owner/operator of a senior services campus—among other pursuits. “It sounds like I had a lot of trouble keeping a job, doesn’t it?” he jokes.

Speaking of new beginnings, what advice might John give a prospective Hospicare healthcare worker?

“It depends on what kind of work environment they may be looking for,” John says. “For someone who values autonomy and who is fulfilled by building a true relationship with patients and families over a long term, hospice is great. The reward is helping patients and their families through the final journey. Of course, we have accountability, but each day we are pretty much able to design our day, meaning where we go, who we see, and so forth.”

Regarding the unique aspects of hospice patient care, John reflects, “Our patients are as ‘real’ as they come. I have had more real heart-to-heart conversations with patients in the hospice setting than anywhere else. So, if a nurse is looking for this type of setting, Hospicare is a great opportunity.”

Outside of work, John is a board member of Cortland’s Family Health Network, a group of five federally qualified health centers in Cortland and Cayuga counties. John also enjoys gardening and farming their half-acre plot with his wife, Liz, a Cortland native. But perhaps his biggest passion is raising and farming with Belgian draft horses, which he did while living in Ohio. “Let’s call that a retirement goal,” says John.

In Gratitude…

This time of year we traditionally gather with friends and family. That may look a little different this year, but we can still cultivate gratitude in our hearts. 

November is also National Hospice and Palliative Care Month, a time to pay special recognition to the work done every day by these skilled individuals, whose dedication to Hospicare’s mission has withstood even a global pandemic.

The story of Norma Helsper (as told in the video below) highlights the continuous service our interdisciplinary team has provided to all those that need our care in our community. 

We also wish to honor those advocates, volunteers, referral partners, and donors whose support sustains the good work of Hospicare. We thank YOU for all the many ways you support Hospicare!

End-of-Life During a Pandemic; Norma Helsper Made the Best of it.

By Jennifer Gabriel

From the moment Norma Helsper moved into the Hospicare residence, staff knew they were greeting someone special. Phones rang off the hook with dozens of friends asking about visitor restrictions, and whether it would be okay to drop off flowers or her favorite custard. “Norma’s got spunk and you’re going to love having her there,” one caller told me. 

So maybe I shouldn’t have been surprised when I walked into her room for the first time.

Norma is perched in her recliner, carefully studying her absentee ballot for the New York primary election.  

“You’re voting!” I say. 

“Of course I’m voting!” she exclaims. “Of COURSE! This is an important year. Too important to miss.” 

Norma folds her ballot and places it on her table, as I settle onto the edge of her bed. Norma’s mom is sitting across from us, answering a cell phone that never stops ringing.  Because of Hospicare’s COVID-19 restrictions allowing only one visitor in the room at a time, Norma’s sister sits outside, waiting for her turn. 

“It’s awful,” Norma says when I asked about her experience in facing end-of-life in a pandemic. “This makes it so hard for me to see my friends, though I’m grateful that one can be here at a time. I know that’s not true in so many other places.” 

Thirty-three years ago, Norma moved from her childhood hometown outside Chicago to the Finger Lakes. She had accepted her dream job in the Spanish department at SUNY-Cortland, where she quickly became close with her colleagues. The tight-knit group of friends are many of Norma’s callers and visitors these days, and they show up in ways both big and small.  Luscious bouquets of flowers fill every surface in Norma’s room, and greeting cards cover her bulletin board. 

As we chat, Norma points to a wilted flower arrangement on a table behind me, and kindly asks if I can remove it.  No sooner is it gone and she is back on the phone. “Good news!” she tells a friend. “There’s room for more flowers! Bring some anytime!” 

Norma and her husband first settled in Cortland, and eventually moved to Ithaca, where they bought a home in Fall Creek. “Oh wow — the Halloweens in Fall Creek!” she chuckles, referring to the hundreds and hundreds of families that flock to the neighborhood every year for candy and community. “That night is something, isn’t it?” 

Norma is easy to talk to and quick to crack a smile, so I understand why people gravitate towards her.  One of those people – a friend named Mary — is the reason Norma came to know about Hospicare. 

“Mary was a wonderful, wonderful friend,” Norma explains. “One day, she called me up and said, ‘Norma, there’s no easy way to say this: I have lung cancer’.” 

Eventually, Mary moved into the Hospicare residence. 

“I remember it was room 3 because that one has the larger deck,” Norma recalls. “And one day we had a little soiree there with a whole bunch of friends. We really had the nicest afternoon. It was such a nice moment, and a truly great memory of Hospicare.” 

In the years that followed, Norma continued to support Hospicare, raising money for the agency as a swimmer for Women Swimmin’ for Hospicare.  

Surgery and treatments kept Norma’s ovarian cancer at bay for several years, but this spring, it became obvious that Hospicare is where she needs to be.  “The people that take care of us are amazing,” she says. “The rooms are comfy. The birds are beautiful. The grounds are beautiful.” 

Norma’s days are filled with friends calling her phone, trips through the Hospicare’s gardens, and visits with her good friends from SUNY-Cortland and her church, the First Unitarian Society of Ithaca.

Twice now, three of her talented friends have come by to play music for Norma to enjoy – since they aren’t able to be in the residence together, they pull up a picnic table and sing to her from below her porch window. 

That’s also where the minister from the Unitarian Church planted 16 colorful flamingos in the grass, to give Norma a laugh. 

Norma remains upbeat, but this hasn’t been an easy road.  Norma’s husband needs round-the-clock care and lives in a nursing home. The couple has not been able to get together, not even virtually, since he doesn’t know how to work the technology. “It’s very hard,” Norma tells me. “It’s what we both had to do and it was the right decision. I know that. But it’s still hard.” 

Norma’s only daughter lives in a group home some 45 miles away. Restrictions there mean no residents are allowed to leave – the staff made a special exception for Norma, so she was able to see her once so far. But of course, that’s not enough. 

And then there’s her 92-year old mother, Betty, who traveled from the Chicago area to be with her daughter for a week. She hopes to return soon, but traveling is difficult at her age, and she isn’t sure when she’ll be able to make the trip. 

I ask if I can take a photo of them together. “Of course,” Norma says with a smile. Betty is a little more reluctant, quietly admitting that she hadn’t taken a single photo of Norma since she moved to Hospicare.  

Betty pulls out her phone and swipes to find a picture from last fall, when Norma’s cheeks were full and her body stronger.  “Isn’t she beautiful?  Just so beautiful.” 

Norma encourages her mom to take the photo with her, and Betty moves carefully to Norma’s side.   

“This isn’t what is supposed to happen,” Betty says to Norma, once the photo has been taken and she’s settling back into her chair. “I’m supposed to go before you.”  

Her voice quivers. “This really isn’t what is supposed to happen. It’s just not.”  

“I know, sweetheart,” Norma replies softly.  

They lock eyes. 

 “I know.” 

Putting memories into words … a life of poetry

There are many stereotypes about Hospice that we see dispelled every day by patients in our service. Sometimes the sound of laughter and song float through our residence as patients connect with family, staff, and volunteers. And there are often signs of creativity, such as the handmade paper flowers Martha decorated the hallway of the residence with. Russell Bourne, or Rusty as he is known, is one of those patients on our services who seems to defy our expectations of what final stage of life looks like. While on Hospice, Rusty published a book of his poems.

Earlier this Spring, Rusty shared poems at Lifelong from his recently published book Between Sky and Water; Poems of Maine, the Finger Lakes, and Changing Weather. His poems elicit a rich felt experience of our relationships with the ever-changing landscape and how it can touch our hearts.

Rusty signs our copy of his book – “For my friends at Hospicare.”

The event beautifully illustrated the community collaboration between Kendal, Lifelong, and Hospicare, and drew a lively audience as Rusty said “cried when they were supposed to cry and laughed when they were supposed to laugh”.  Rusty’s poems were well received and he elicited many chuckles from the audience when he opened his Q&A by asking “Are there any other questions? Like where is Maine?”.

Russell Bourne began his career as a writer on LIFE Magazine in 1950. Career interrupted by the Korean War, he operated as a Special Agent in the US Army’s Counter Intelligence Corps in Berlin until 1953. He then returned to Time, Inc, and served as Henry Luce’s assistant. Thereafter, he ran several book publishing departments, from Time-Life Books and American Heritage to the National Geographic and the Smithsonian. In the 1980s, he began creating books on his own and published about a dozen works, mostly on American History and Transportation, while also writing poetry. His poems have been published in reviews and journals across the country. He is a Fellow of the Massachusetts Historical Society. For many years his habit has been to spend summers in Maine and winters in the Finger Lakes.

Many of Rusty’s poems document “the excitement that I find in nature”. This connection to changing weather and the patterns of life and death in nature, prepare the reader for taking on more challenging topics of the heart like love and loss. In addition to facing his own mortality, he has also had two wives that received hospice. These many touches with death, and navigating his own grief are themes throughout the book.

From his poem, At Finger Tips…

Stretch out to seek her soft hand across midnight bed’s

cotton sheets

(though she is no longer there) and find answering fingers

cool and squeezing back on yours and know

love may come at black

night again.


Rusty surround by some of his favorite artwork at his residence at Kendal.

At the end of the discussion Rusty advocates for everyone writing their personal memory “For our lived experiences are what make us, and no one will write them down if you don’t”. Russell’s book was published by Cayuga Lake Books and is available locally at Buffalo Street books or online.

Thank you to Rusty and his family for their support in writing this article.

A Movement Prayer

By Mimi Quillin

When I was at Boston Conservatory of Music majoring in dance, a group of us visited a hospice and performed for the people living there.  More than three decades of performing later and it is still one of my most memorable experiences.

The performance – a Christmas show – started.  Lacking a proper stage we danced in a big room with our audience in wheel chairs surrounding us.  Every way I turned there was a new face watching me.  Knowing that our audience was terminally ill made me cautious about how to approach them. They looked so delicate, propped up in their wheelchairs, with their heads covered in scarves to keep the cold from their heads.   I wondered if I needed to alter my presentation in some way to make them more comfortable. I was terrified, but I kept dancing and smiling and pretending that my audience was perfectly healthy.  As my nerves calmed down I began to see the looks of sheer joy on their faces.  I don’t know how to describe it without sounding trite.  Maybe it’s just one of those things that you have to experience to understand.  I was only 20 years old and I couldn’t imagine what it might be like to be dying.  I definitely didn’t think it included smiling or expressions of joy.  It was my first experience of understanding of the power of dance to communicate.  I had spent an awful lot of time working at becoming a dancer and a lot of that time is solitary.  It’s self-driven because let’s face it – no one else cares if you can point your feet or jump high or how many pirouettes you can do except you! And all that work was now giving something to someone else.  And much to my surprise, it was giving something to me, too!   I took a giant step forward feeling the responsibility and power flowing through me.   It was different from my parents or my teachers applauding me. I now had power to make contact and to bring joy.

Years later when I wasn’t getting much work because of hitting middle age – and that is bad news for a dancer (especially a female dancer) – I decided to seek out that experience again. I took a job as an artist in residence at Calvary Hospice in New York City.  I went there wanting to relive that strong connection to an audience that gave me so much power.  I honestly didn’t take the job for altruistic reasons, as much as I would like to pretend I did. I was looking for something. I knew that I was needed there. It was that simple.

Dancing is not at the top of the activities list in a hospice, but I discovered that every single person I came into contact with had a relationship to dancing.  I led a large group in dancing, I danced with patients in their rooms, I talked about dance with a dying dancer, I talked to a man who met his wife dancing to Artie Shaw before Artie Shaw became famous!  I remember one patient especially— Mr. Lettman.  He wasn’t actually ready to be in the hospice yet but he had no where else to go and he was seriously ill with prostate cancer.  He had been a New York cab driver since immigrating there from the Bahamas.  Knowing he could no longer walk, I began our time together by suggesting that he could move as much as he wanted to right there in his bed.  It made sense to him and he really missed moving.  I put on a CD of the song “Wade in the Water” and prepared to lead him in some movement.  Well….Mr. Lettman showed me!  He closed his eyes and he started by putting his palms together in a prayer.  As he expanded his movements I realized I was witnessing a movement prayer.  One of the nurses entered during his dance and she stopped and watched with me.  She looked surprised but the joy in his body was contagious and she began to smile and nod to me.  We both knew it was a very precious and special moment to behold.  The music ended and Mr. Lettman opened his eyes and smiled at me and said, “Thank you.”  I thanked him back.  I believe that was some of the most authentic dance I have ever had the privilege to see.  I was included in his prayer.

My play, Dégagé (disengage), was born of my journal record of experiences like the one I had with Mr. Lettman.  I grew to care very deeply about many of the people at Calvary. And I learned to care the moment I met them because very often they were not there when I returned. They were on a bridge and had already started their journey.

The residents of Calvary allowed me in to the most private of moments in life – their death.  And when I sat with them or moved with them people often told me all about themselves.  I suspect if we had met under other circumstances that they might not have been so open,  but when it’s your time, you want to be remembered.

It was an honor to be here with them.  Dégagé (disengage) seeks to honor every single one of them.

 

Mimi Quillin is a performer, choreographer and writer. Her original play, Dégagé (disengage) will have its world premiere at the Hangar Theatre July 20-29, 2017. Visit the Hangar’s website to learn more and to purchase tickets.

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How Hospice Helps: One Patient’s Story

by Pauline Cameron, RN, CHPN

Pauline
Pauline Cameron, RN, CHPN

I worked with a patient who was in his late 30’s and had been diagnosed with an aggressive form of colon cancer. At the time of his referral to hospice, we had been told that his pain was not well-controlled. On my arrival at his home, the patient was lying on the sofa. I explained the 0-10 scale for rating pain and asked him to give me a number; through gritted teeth, he said, “Nine.”  And it was clear what our first priority had to be…

We quickly got his pain down to “6,” at which point he was able to engage in conversation and looked much more relaxed. Over the next several days we visited him twice a day and worked with his MD to adjust the doses of four different drugs, as he actually had multiple kinds of pain – a narcotic, a neuropathic med (for nerve pain), a steroid, and an NSAID (e.g. ibuprofen) for bone pain.

One day I walked in and, as usual, found him lying on the sofa.  I said, “OK, you know the drill – what’s the number today?” He gave me a big smile and, making a circle with his thumb and index finger, said “Zero.”

Yes, that patient died, and that was sad. But before he died he got up from that sofa and took his children to visit Marineland and took them fishing and went to visit his parents once more. He really lived until he died. Excellent pain management gave him back what was left of his life.


Pauline Cameron, RN, CHPN was a Hospicare staff member for many years until her retirement in 2014.

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