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

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!

Our Hospice Angel

Post by Gail VanPatten

When we heard the news of Bill’s condition it felt like my world was coming to a complete end…Life had no meaning…I kept asking, “Why?” We had so many plans for the future and now to be told this.

Hospice was brought up and explained to me how Bill could be at home with his family and not be in a hospital. We were also told that there would be someone to help us, just a phone call away whenever we needed it, even if our family needed it. Our Hospice nurse came often to check on Bill’s condition and would show us what had to be done and how to make him comfortable.  She explained how to handle certain situations that might arise as it became closer to the end.

Hospice encouraged me to talk to him about what he wanted me to do with our farm and the people I should contact. This was something I needed to know.

Our nurse came at a moments notice if I needed her. She would arrive when tears were streaming down our faces and would have us smiling and talking about the good times all of us shared and memories we would never forget.  She was our “Special Angel” and someone I trusted and who would listen when we really needed to talk.

Even when Bill was in a coma she told us to talk to him and tell stories that were important to us.  Our nurse said he could hear us and I truly believe he did.

I never thought twice about calling in the middle of the night if there was a turn for the worse and if I was scared that I might do something wrong.

One of the hardest things I ever did in my life, that our Hospice nurse was very emphatic about telling me, was to let him know that I was going to be okay.  Only hours after I did that, Bill died that night.

At that point I called Hospice and they came and took care of everything.

I wish everyone in our community would think about having Hospice if they have a love one in the final stages of life. The nurses and volunteers are there for you. To be at home with your family and things around you that you love is so important.

Shortly after the funeral Hospice contacted me to see how I was doing and suggested a volunteer would be in touch me that I could talk to.  I did go out to dinner with her and after that she kept in touch with me.

I am so thankful for the doctor that put me in touch with Hospice at the time when our family needed it the most.  As a board member of the Hospice Foundation of Cortland County, and as a family member of someone on service, I realize how important Hospice is and what wonderful things are being done.

Gail VanPatten served on the Board of the Hopsice Foundation of Cortland County. She wants everyone to know about the help and comfort that is available to them through Hospicare. She is pictured here, on the far right, with current members of the Hospice Foundation of Cortland County.

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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