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!

Why I Work in Hospice (Part 5) – Sarah Nickerson, Communications Coordinator

A Special Blog Series Written by Hospicare & Palliative Care Services Staff

This November, we started a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Because we had such a positive response to the series, we are continuing it past November and into 2022. Each post features a different member of our staff as they share why they love the work they do. In part five of this series, we feature Sarah Nickerson, Hospicare Communications Coordinator.

Sarah Nickerson, Hospicare Communications Coordinator

“Hi, my name is Sarah Nickerson, and I am Hospicare’s new communications coordinator. I spent the summer helping Hospicare’s development team with Women Swimmin’ as the seasonal events assistant, and was hired into my current role by Sara Worden, director of development and community relations, in November. I am so excited to take on this role and help share the amazing work our team does and stories of the people we serve!

My relationship with Hospicare began many years ago. In my early twenties, I accompanied my mother, who was a Hospicare volunteer, to a bereavement group for children held at the residence on Kind Road. A few years later, I proudly waited on shore while she swam across Cayuga Lake as a participant in Women Swimmin’ for Hospicare. In the summer of 2018, my mother was diagnosed with a terminal brain tumor and given less than a year to live. We were fortunate enough to be able to move her into Hospicare’s residence for the final months of her life. Having my mother in care at the residence allowed us to be with her as loved ones and not caretakers, which we were ill equipped to be. Hospicare became a home away from home in those last two months before my mother’s death: a safe space filled with love, where I could be nurtured by community.

The amazing care that was given to my mother and to our entire family by Hospicare’s staff stays with me and is why I am so honored to be part of this team today. I look forward to continuing to help Hospicare provide our community with compassionate end-of-life care and grief support.”

I took this photo of my father holding my mother’s hand while she was in care in the residence at King Road just a few weeks before her death on Valentine’s Day of 2019.

***If you have a hospice or Hospicare story you want to share, please email Sarah Nickerson at snickerson@hospicare.org for more information or send a letter to:

Hospicare & Palliative Care Services

Attn: Sarah Nickerson

172 East King Rd

Ithaca, NY 14850

Why I Work in Hospice (Part 4) – Anna Osterhoudt, Social Worker

A Special Blog Series in Honor of National Hospice and Palliative Care Month

This November, we are sharing a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Each post will feature a different member of our staff as they share why they love the work they do. In part four of this series, we feature Anna Osterhoudt, Hospicare Social Worker.

Anna Osterhoudt, Hospicare Social Worker

“My name is Anna, and I am one of three social workers that are a part of the Hospicare team. My role as a hospice social worker is to assess the needs of our patients, their families, and support systems and provide any assistance I can. A few examples of things that I may assist with are providing emotional support to patients/caregivers, connecting them with community resources, assisting with end-of-life planning, or just being a friendly face during what can be a very difficult time.

I have been working professionally as a social worker in the medical field for the last eight years. However, I only recently joined Hospicare & Palliative Care Services three months ago. Making the decision to join Hospicare was not a difficult one as I have grown to be very passionate about hospice work, both professionally and personally. It is truly an honor and a blessing to be on this journey and to be a part of someone’s final chapters on this earth. 

With the right support, death and dying can be a spiritual, dignified, and peaceful experience. To be able to be a part of that experience and offer support and solace to patients, caregivers, and families during that time is a privilege that I cherish. It can also be scary, emotional, and trying but what is so special about Hospicare is that no matter what the experience is, which is very different for everyone, we are never alone. As a team we support each other, the patients, their families and caregivers, other agency staff, you name it, we are never left to handle it alone.  So why did I choose to work in hospice? There is a saying ‘Find a job you love, and you’ll never work a day in your life.’ I was lucky enough to find that job with Hospicare.”

Why I Work in Hospice (Part 3) – Wendy Yettru, Manager of Volunteer Services

A Special Blog Series in Honor of National Hospice and Palliative Care Month

This November, we are sharing a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Each post will feature a different member of our staff as they share why they love the work they do. In part three of this series, we feature Wendy Yettru, Manager of Volunteer Services.

Wendy Yettru, Manager of Volunteer Services

“Hi, my name is Wendy and I’m the Manager of Volunteer Services at Hospicare & Palliative Care Services. When I started working here, over 20 years ago, I didn’t know much about hospice. It didn’t take long for me to see firsthand how the amazing team of professionals, including our volunteers, provides comfort physically, emotionally, and spiritually for our patients and their families. I believe in the philosophy that hospice is there so that patients may live as fully and comfortably as possible while facing end of life.

My position allows me the privilege of educating and working with community members who want to give their time and talents to Hospicare. I have enjoyed getting to know hundreds of people in Cortland and Tompkins counties as they learn about hospice and how their role as a volunteer makes a difference. Volunteers may offer to run an errand so a caregiver can have more time with their loved one; they may listen to a patient’s life stories, engage in conversation, play a game, help with a task, or be a quiet presence so someone doesn’t have to be alone. I have had the pleasure of hearing and witnessing many beautiful stories about the connections that happen between our volunteers and patients. I am honored to work with such an amazing organization and people!”

Why I Work in Hospice (Part 2) – Suzy Quinones, Hospicare RN

A Special Blog Series in Honor of National Hospice and Palliative Care Month

This November, we are sharing a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Each post will feature a different member of our staff as they share why they love the work they do. In part two of this series, we feature Suzy Quinones, Hospicare RN.

Suzy Quinones, Hospicare RN

“My role here at Hospicare is to help patients live the rest of their lives as comfortably as possible and to help ensure their wishes are fulfilled. Providing education and suggestions for patients and their families about how best to meet that patient’s specific needs and how to manage their symptoms adequately. Every patient is different, so I like to customize my care to best fit each patient’s needs and wishes.

At Hospicare, we really try to meet people ‘where they are’ and adjust to their needs accordingly as time goes on. To help make this possible, collaboration with other members of the Hospicare team is essential. Our team is made up of social workers, bereavement specialists, our medical director, spiritual care, volunteers and so many others that help keep our patients safe and comfortable.

Death is commonly seen as a scary thing, but it doesn’t have to be. I try to make death a beautiful transition for patients and their families by doing anything I can to support them physically and emotionally during this time. I feel very blessed that patients allow me to accompany them on this journey.”

Why I Work in Hospice (Part 1) – Kimmy Jones, Clinical Team Leader

A Special Blog Series in Honor of National Hospice and Palliative Care Month

This November, we are sharing a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Each post will feature a different member of our staff as they share why they love the work they do. In part one of this series, we feature Kimmy Jones, RN and Clinical Team Leader.

Kimmy Jones, RN, Clinical Team Leader

“Hello, I’m Kimmy. I’m the clinical team leader for Hospicare which means I supervise the primary nurses, LPNs, and home health aides in the field. Most of the patients we serve are in the field, living in a private home or a facility within Tomkins or Cortland counties. I’ve been an RN for 16 years and hospice work is the most meaningful nursing care I’ve ever done. It’s sacred work. I started my nursing career in the emergency department, then I worked in lactation education and breastfeeding/chest feeding support, and now I work in hospice.

I started here at Hospicare a little over three years ago as a primary nurse. After a year, I moved into the team leader position. This move just happened to take place right before the discovery of the Covid-19 virus. We have continued to serve the community and our patients throughout the entirety of the Covid-19 pandemic and to be diplomatic, it’s been quite a learning experience. The reason we have been successful during this time is our outstanding team of devoted staff members. Everyone has their heart focused on the mission to continue to care for our community, which has allowed us to forge through the uncertainty and ever-changing landscape of nursing care that has been brought on by this pandemic.

Hospice work can be very emotionally taxing. It can even be heartbreaking. But it’s some of the most rewarding and special work I’ve ever done. We are invited into people’s homes during a very sacred and intimate time, and it is such an honor. It feels fulfilling to be able to alleviate distress, whether that’s physical or emotional, and for the patient and family to trust us and look to us for guidance and reassurance. You’ll be hard pressed to find any healthcare worker who doesn’t find that rewarding. 

When asked ‘What brought you to work in hospice?’, a lot of people have beautiful stories about a personal experience they had when a loved one received hospice. I don’t have a story like that. For me, it just felt good. It felt right.”

The Night You Died – a love story, a poet, and her legacy

By Jen Gabriel

It was a sunny spring afternoon and an unassuming envelope arrived in Hospicare’s mailbox. Inside, a generous check and a single piece of paper. 

“To whom it may concern,” the letter began. “Enclosed please find my final donation. I have a terminal illness and will not be further donating to any organizations. Sincerely, Joyce McAlllister.” 

Joyce’s friend and caregiver, Erin Quinn, said that this effort was Joyce’s way of saying goodbye to the dozens of nonprofit organizations she had supported. 

“Joyce had a soft spot in her heart for nonprofits of all kinds,” Erin explained. “She made small gifts to them her whole life, and when it came time to prepare for her death, she wanted to be sure that her favorite charities knew why her giving would soon stop.” 

In addition to supporting Hospicare and a handful of other local organizations, Joyce made gifts to many animal rescue organizations. 

“Joyce always said, ‘everyone always cares about the elephants and the big cats, but no one ever thinks about the donkeys’,” Erin said, with a chuckle. “She loved her donkeys.” 

Born in Ithaca in 1931, Joyce and her family lived on dairy farms in Groton, and later in Dryden. She graduated with an Ithaca College degree in drama, left the area to live in New York City for a few years, and returned to the Ithaca-area in 1960. It was then that Joyce began a 30-year career at Cornell University.   

Joyce’s strong connection and affinity for Hospicare began in 2004, when the agency cared for her husband John, first at home, and then at the residence.  

“Hospicare did everything right by Joyce,” Erin said. “She felt so supported and cared for, and that meant everything to her.” 

After she retired, Joyce turned to poetry writing. She published her first book of poems at the age of 85.  In fact, it was her 2004 experience with Hospicare that inspired her poem, “The Night You Died.” The poem expresses Joyce’s gratitude for the Hospicare nurse who had sung her husband’s favorite Irish tune with him in the moments before he died. 

A copy of that special poem is below. Joyce’s third book of poetry, published posthumously, will be available for purchase later this year.  

The Night You Died 

Afterwards, they told me  
how you sang your way 
to death, head raised high  
to catch your ever-thinning  
breath, singing melodies you  
learned in youth, forming  
words you watched parade  
across closed lids. 

The Night Pat Murphy Died  
sounded from your bed,  
moved out the door, down  
the hall; your soul followed  
with a will, anxious now to  
find that spot of green you  
knew from birth was yours  
to claim. 

They said your voice was  
resolute and unafraid,  
an Irish tenor making  
song to spend the leap  
from finished life to  
timeless death. Beside a  
stone in County Cork,  
ancestors perched  
and waited.  

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.”