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.


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 or call 607-272-0212.

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

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.”

Advance Directives Communicate Your Wishes at the End of Life

by Suzanne Carreiro, LMSW, Hospicare Social Worker

One of my jobs as a hospice social worker is to help our patients and their families think about and complete advance directives. Advance directives provide a road map to future healthcare and are important documents everyone should have. They can include a healthcare proxy (someone you designate to make decisions about your healthcare if you are incapacitated); a living will (guidelines about the type of care you want or do not want); and a Medical Orders for Life Sustaining Treatment (MOLST) form (a document signed by your doctor outlining the type of care you want and who can make decisions for you).

Talking about advance directives and long-term healthcare wishes can be difficult, especially if the first discussion is at a time when a loved one is seriously ill or dying. I encourage you to talk regularly with your loved ones about the type of care you’d want so they aren’t left struggling to guess your wishes. The other important step is completing the advance directive forms.

But how do you make the important decisions necessary to fill out these forms? The following are some suggestions you may find helpful as you think about your own advance directives.

  • Figure out what’s most important to you. What do you value about your life, your health and how you live? How much medical care are you generally comfortable with? Would you want everything possible medically to be done for you? Would that change if you were diagnosed with a terminal disease? Knowing how you think about healthcare and life is the first step in being able to articulate your wishes for your own health.
  • Decide who you want to speak for you. If you’re unable to speak for yourself, who do you trust to make healthcare decisions for you? For some people, this is their spouse or adult child. I know one woman who chose a close friend to be her healthcare proxy because she didn’t believe her family members would abide by the type of care she would want. I’ve had patients who chose a sibling or adult child because they didn’t want to burden their spouse with making tough decisions at what would be a very emotionally difficult time.
  • A healthcare proxy is more important than a living will. For most adults, having someone you trust as your healthcare proxy matters more than having a detailed living will. The living will forms might encourage you to try to imagine every possible medical scenario, but things rarely happen the way they were imagined. It’s more important to speak to your designated healthcare proxy (and other family members and close friends) about your general philosophy of care.
  • Talk to your primary care physician about a MOLST form. (In some states this form is called POLST or physician’s orders). Most of us don’t need a MOLST form yet, but for people who are getting older or who have been diagnosed with a serious illness, the MOLST form replaces the living will. Since MOLST forms are signed by your doctor, they are actual medical orders.
  • Review and revisit your advance directives periodically. As your health or life circumstances change, you should review, and perhaps revise, your advance directives. At a minimum, we recommend reviewing your advance directives when you have a birthday and your new age ends in 5 or 0; when you’re diagnosed with a serious or chronic illness; if you get divorced or married; or when someone close to you dies. To revise your living will or healthcare proxy, complete new forms and have them witnessed, write “revoke” on your old forms or destroy them, and give updated copies of the forms to your healthcare proxy, your physician, your local hospital and anyone else who has a copy of the previous forms. If you have a MOLST form, your doctor is required to review it with you periodically, especially if you move, have a change in health status or change your mind about care. You need to hold onto the originals of the forms and keep them somewhere they can be easily located if needed.
  • There are no right or wrong answers. Go back to the first item in this list. Who are you as an individual and what do you value? Each of us have our own wants and needs. Your healthcare wishes don’t need to match anyone else’s wants and needs, they just need to be right for you at this time.

Advance directives are something every adult should complete and discuss with their loved ones. You don’t need a social worker or medical professional to complete these forms; you can do it on your own. In most situations, in New York State, to complete the living will and health care proxy forms you only need two people to sign as witnesses.

Visit Hospicare’s Advance Care Planning web page to learn more.


The Heart of Hospice Social Work

Learning the Wisdom of Humility

by Jeff Collins

I was a social worker for Hospicare for 22 years, and I truly feel these years at the agency have been a profound blessing. There are many facets to this sense of blessing, but I think the deepest and richest part has been the way it has helped me see another human being as a fundamental mystery. I am coming to learn that it is my job to meet that mystery, to learn about it as best I can.

At the same time, I have a deep-seated tendency to think I know what is best for another. So much that is behind my sense of knowing what is best for another depends on my desire for him or her to live and die, and to experience loss, in a way that I am comfortable with. Now I begin to see that when I meet another person, I am meeting an unfolding world, with all of its history and momentum, its joy and pain and confusion and wisdom. And I have slowly started to understand the wisdom of an increasing humility.

Very early on in my work at Hospicare, I spent a year doing bereavement counseling with a woman who had just lost her husband. We would meet weekly, and she was generally in a state of desolation, living the question, “There is nothing for me in this life anymore, why would I want to go on?”

For quite a while I found myself trying to convince her that of course she should go on in this beautiful life of ours. She put up with me and maybe benefited from my way of being with her. But in one particular session, it finally dawned on me that I really knew nothing about this woman and her real situation. I was too busy trying to convince her of my point of view. But what did I really know about her, about the real meaning in the arc of her life, about why she was in this world and when she might be done with this world, even if her body continued to survive? I was trying to convince her of a point of view, like a lawyer trying to win an argument. So to some degree a real sense of humility landed in me, and I was much more able to meet her in a much more open way.

This gift of humility and the ability to connect with patients and their families has come to feel like the heart of my “craft” as a hospice social worker. It has lead to a deepening sense of coming home into my own life, and into life in general. All the wonderful, beautiful Hospicare patients I’ve worked with through the years have led me to this place in my own development, and I am grateful.

Jeff Collins was a social worker with Hospicare for 22 years until his retirement in 2014. He continues his involvement as a volunteer and member of our Ethics Committee. This article was originally written for our February 2014 e-newsletter.

I was a Designated Hugger

by Kira Lallas, LMSW

As a bereavement counselor for Hospicare, part of my job is to reach out to loved ones of those who’ve died on hospice services. This can mean coming in to contact with all kinds of people, from many backgrounds, with a variety of needs and temperaments at a very vulnerable time of life.

It is important to be open and to let people know I genuinely care about their well-being as they face loss, as well as to be sensitive to people who don’t want to open up and may not want to share what they’re facing. So my approach is direct and responsive, ready to be present with people and cautious to let them be if they’d like.

When I was a hugger for Women Swimmin’, my job was to greet swimmers as they came out of the water after their swim, to embrace, congratulate, and thank them. As the first swimmers came in, I could feel a similar sense of cautiousness about immediately hugging people that I might have not met before – did they want to be hugged? Was that too direct or close for some? Should I really hug everyone?

But as the women actually climbed out of the water onto the dock, excited and proud, smiling and sometimes crying, I too became excited and proud, and was smiling and sometimes crying. I felt so moved by these hundreds of women who had spent long weeks or months asking friends, family, and strangers for donations, readying their bodies to make the swim, and readying their hearts to feel whatever they might in honor of one or many loved ones who’ve died.

Needless to say it was both fun and moving to be a hugger at Women Swimmin. And, as so often happens when offering families support: what seems like Hospicare giving to patients or families is in fact others truly giving to Hospicare, by sharing such a special and intimate time of life with us. Instead of giving hundreds of hugs that Saturday in August, it turned out I received them.

This article was originally published in Hospicare’s September 2012 e-newsletter. At the time, Kira was the Hospice and Community Bereavement Counselor. While she is no longer in that role, Kira continues her involvement with Hospicare as a per diem social worker and occasionally leads special bereavement groups. She’s also continues to support Women Swimmin’ for Hospicare.