Living with Dying -2

This edition’s author is Dr. Diana Barnard, Palliative Care Physician, UVM/Porter Medical Center and Addison County Home Health & Hospice.

Lets talk (some more) about hospice:

“Enrolling in Hospice when you have a life-limiting or terminal illness makes it possible for both patient and caregiver to gain medical and nursing help as well as essential emotional support. Working with us in a mutual, respectful way, our Hospice nurse set up a flexible, effective treatment plan for my husband, and I no longer had to try to be Florence Nightingale. Instead, my husband and I were able to focus on the quality of life and comfort and peace that each day brought us. “ ~Andrea Perham, Middlebury


Myth #3

 “Going onto Hospice means giving up my privacy and having strangers judging how I live”

When you enroll in hospice, meeting your physical, emotional and spiritual needs in a familiar setting is the goal. Your team of providers will have specialized training in identifying your unique values, and in providing care that helps you live as well as you can on your terms. A variety of therapies may be offered, but you will decide which ones are right for you. One of the many benefits of enrolling in hospice when you have months to live is that there will be time for you and your team to get to know each other well and to deepen understanding of your priorities.

Its normal for people to be nervous about having people you don’t know in your personal space at such a tender time. Individuals who work in Hospice have visited hundreds of homes across Addison County. These care providers are well aware of the diversity of circumstances in which we live. Hospice teams understand that it is a privilege to be invited into a person’s home and will respect your home, your privacy and your dignity.


Myth # 4

When you sign onto Hospice, it means giving up Hope.

Birth and death are natural parts of our life cycle. In between these transitions, most people want to live as long and as well as possible. When diagnosed with a terminal illness, most people hope for a cure. There is nothing wrong with that! Its crucial to remember that hope is much more powerful than any disease, and there is always more hope to be found if we are willing look for it. If you limit yourself to only one hope, you may miss the opportunity to spend time and energy on what matters most to you. Hope can literally transform the experience of dying. Hospice is about embracing hope. Hospice teams are specially trained to help bring to life your other hopes: sharing memories with family, having your pain well managed, completing personal goals, having a peaceful death, and more. There is no end to hope.


“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all.

-Emily Dickinson


New Hospice Chaplain

Addison County has been very fortunate to have Gary Lewis serve as the Hospice Chaplain for over 20 years.  As hospice chaplain, Gary shared his warmth, his humor, his compassion and his personal story throughout our community, providing peace and comfort to many. We are truly grateful for the gifts he has bestowed upon our patients, families, caregivers and volunteers.  At the end of 2017, Gary stepped down as Hospice Chaplain. 

We are fortunate to have another remarkable man begin his tenure as our new Hospice Chaplain, Stephen Payne.  In his own words, Stephen tells us a little about himself. 

All of us are aware at some level or another that our individual lives will come to an end.  It is rather easy to ignore this fact for quite some time, at least until age, serious illness, or the death of someone we love brings the whole topic to the surface.

          I have recently inherited the position of chaplain with the Addison County Home Health & Hospice (ACHHH) organization.  What qualifications does a chaplain need?  The short answer is...I'll know better as time passes and I continue to learn my way around!  Presently, I can look back over my 24 years of pastoral ministry for hints at what people might be thinking and feeling as the end of life approaches.  My congregations have experienced their full share of loss and grief at the death of members of the church family, neighbors, and friends.  In my personal life, the deaths of my grandmother after a LONG struggle with dementia and my dad after a much quicker course of a different form of the disease (and at only 2 years older than I am presently!) have given me much time to think about what the mortality of human beings means.

      I am descended from generations of New England Puritans, Vermont Congregationalists, a French Canadian Catholic branch of the family, and Quakers who settled the hills of Lincoln very early on.  In my own life, I've explored a number of denominations and enjoy the ideas that all people bring to spiritual discussions.  I believe that all of us have pieces of the truth and can always learn from others.

          Beyond that, I bring my knowledge of Addison County people to the job.  I've lived here all my life, save for a few years in Pennsylvania to attend seminary and a couple of other shorter adventures.  I am descended from generations of Vermonters...mostly farmers...and am very familiar with most of our Yankee idiosyncrasies.  Quite often, many of us are guilty of...or at least accustomed to...holding in our emotions.  However, when coming face to face with questions and feelings we may have avoided until late in our lives, perhaps you, or someone you know, may like to explore some ideas with a neutral person.  I would hope that I can be that person for both the patients and families of folks who find themselves making use of the many services offered by ACHHH.  I am beginning to find my footing as I listen on a weekly basis as nurses and other caregivers discuss ways to better serve their patients.  I have also been aware of the many services offered by the Hospice Volunteer Services (HVS) and am impressed by their dedication.  I've learned of the work done by those who pushed for the creation of the ARCH (Addison Respite Care Home) rooms at both Helen Porter Rehabilitation & Nursing and Porter Hospital to be used by patients at the end of life along with their family and friends.

          I hope to become more involved in all aspects of the whole end of life process as it plays out in the life of individuals within our Addison County community.  I look forward to being of service alongside all of these folks who have been serving their neighbors and friends for so long and so well.


Green Burial

My question is about Green Burial.   I feel that if one knows in advance what procedures will be followed when one dies, it may be easier to go in peace.  Awhile ago we had a general meeting at Champlain Valley Unitarian Universalist Society that explained what Green Burial is and some of the things we need to work towards.  What is the current status of this effort?   Every time I pass a pleasant rural cemetery now I wonder if it is ever going to be Green!  So I am just wondering where it all stands at this time.    ~Jeannie Van Order

Here is a response from Michelle Acciavatti, a green burial educator and co-founder of the non-profit Green Burial Vermont, dedicated to promoting socially and environmentally conscious burial practices in Vermont.

As of 2017, a person can be buried unembalmed, in a biodegradable container or shroud, at a depth of at least 3.5 feet, in land managed in an ecologically sound manner, without a vault. This marks a return to how many Vermonters were buried well into the 20th century. However, because Vermont has comprehensive rules regarding placement and management of a new cemetery or addition and each cemetery determines their own by-laws, at this time no cemetery is prepared to create green burial areas that would accommodate this burial practice. The most important thing people can do to help green burial move forward is to contact their local cemetery commission and let them know they want a green burial so that logistical discussions can start taking place. Cemeteries in Vermont need to know just how important green burials are to the communities they serve.

Michelle is founder of Ending Well which helps people “plan, prepare and experience their own good death.” She can be reached at


Here is another response from Ron Slabaugh, a hospice volunteer who has trained with Beth Knox as a home funeral guide.  He is part of the state-wide organization – Green Burial Vermont:

I have been advising people to approach the sexton of a cemetery they are interested in, asking if that cemetery would allow a green burial. I know of one instance of someone doing this and the cemetery charged an extra $100 for their lots for the purpose of adding more soil in a decade to maintain the cemetery level for mechanized mowing.

I have a friend who knows where he would like to be buried and would like that cemetery to establish a green burial section (“hybrid cemetery” in the lingo of the Green Burial Counsel) and perhaps plant it as a wild flower meadow, with paths and using natural field stones for grave markers. He attended the last meeting of the cemetery commission to inquire about this and they agreed to consider it.  If enough of us start asking, it might happen. Once one or two cemeteries create a green burial section, their experience can help make it easier for other cemeteries.


Resources:     Dying Green – film (available to watch or buy from Amazon)  

Grave Matters - book, Mark Harris from the HVS Lending Library


Grief Etiquette

“Grieving is private, but it can be public, too.  We need to stop being afraid of public mourning.  We need to be open to mourners.  We need to look each other in the eye, and say ‘I am so sorry.’”  Jess Decourcy Hinds

In a previous column we noted that grief is a natural as well as very personal process.  People who are grieving can be comforted by our presence and acknowledgement of their loss and grief.  Because we want to say something to comfort the person who is grieving, but not sure what to say or do, here are a few ideas of what some people have found to be helpful - and what might not be helpful.

Imagine this situation:  Your neighbor, Sam, recently died of a terminal illness.  His wife took care of him at home for nearly 2 years.  You run into her as she retrieves the newspaper from the mailbox.

what you might say:

I’m so sorry for your loss.  It was an honor to know Sam – or to be Sam’s neighbor/friend/co-worker.  (Speak the name of the person who died.  This conveys that you are not afraid to talk about him or to hear what the grieving person might want to say.)

I admire you for your courage and strength throughout Sam’s illness. (Acknowledge her role as the caregiver.)

Sam touched so many lives. (Say how Sam touched your life; share something you remember about him.)

Sam was such a wonderful neighbor.  We all share in your loss and sadness, and will really miss him. (It is never too late to express this; the residual pain will never completely disappear.)

I would like to bring you dinner tonight, or we will keep your sidewalk shoveled this winter, or I can help with keeping your birdfeeders filled (Offer something specific.)

what not to say:

Give me a call any time you need something. (Don’t make them have to initiate contact or a request for help.)

Just keep yourself busy. (Don’t assume what they need at any given point.)

I know how you feel. (We can’t begin to know how an individual feels, but we can listen and learn.)

You must be relieved – his care was becoming such a burden. (It is their loss, not yours.)

At least Sam isn’t suffering anymore, or Sam is in a better place. (This conveys that you’re not open to hearing any negative thoughts/feelings.)  

God only gives us what we can handle (Platitudes like this might make us feel better, but they may be insulting to the person grieving.)

If words escape you, don’t escape from the grieving person. Simply be with them in the moment.  Listen for where they are.  Show up with sensitivity and kindness. Follow your heart. 

“When encountering someone who has experienced the loss of a loved one, don’t run away, hide or ignore.  Smile, embrace, hug, show your love, it will mean more than words.”  Daphne Diego, ARCH

Sponsored by the Living with Dying – An Addison County Partnership


Hospice Volunteers

Who are hospice volunteers and what do they do?

Growing up in Germany I remember nuns with large starched veils in our local hospital. These ladies of the order often filled a humanitarian gap in the system and could be found sitting at bed sites listening to patients, or holding vigil and praying for the anxious and dying. 

I also remember doctors making house-calls. Besides reducing the spreading of infectious diseases, it offered the comfort of HOME to patients, who were too sick to leave the house, but did not need to be in the hospital. 

Eventually, these approaches to health-care were dubbed ‘out-dated’ and a brand new county hospital was built in our city, a modern marvel of technology and efficiency, all with a cafe and small store in the entry hall. What was missing was the quiet of being with a patient. 

 Upon my arrival in Middlebury in the mid 90’s I remember my first visit to Porter Hospital.  I was welcomed by two community members - volunteers - at the front desk, greeting me, asking my name and inquiring how they might direct me. This simple gesture, especially when feeling anxious about a pending procedure, made all the difference.

Within this caring community my two sons were born at Porter - and my husband died in Hospice at home. Beginnings and endings framing the spectrum of our lives. Both birthing and dying are intimate moments, vulnerable, and life-changing. The gift of a caring community cradling us in those times is priceless.

Hospice Volunteer work has become part of my personal bereavement journey. As a Certified Life Coach and Facilitator, I work with individuals who are looking for ways through life transitions, that honor their individual values. As a Hospice Volunteer working with patients at their end-of-life, the same holds true.

This country was founded on pioneers, coming from many different corners of the world, all following a dream of possibilities, a wish for a better life, a pursuit of happiness. In crisis, neighbors helped neighbors.  It often started with support out of necessity, but goes far beyond that when we truly care.

As Hospice Volunteers, knowing we can make a difference in somebody’s life by giving of ourselves freely, honestly, and whole-heartedly is deeply rooted in our humanity.  It speaks to and is an expression of our soul-selves. It is a gifting forward.  We don’t need to necessarily wear starched head veils to do so, the essence of our heart-felt intention is what counts. ~Dorothea Langevin, Hospice Volunteer


Hospice Volunteer Services (HVS) trains community members to become patient care volunteers for those facing the end of life.  Volunteers provide respite for family care givers, companionship, help with daily tasks and projects, reading, listening, emotional support, music, a protective presence, in short, whatever is helpful and needed.  Once trained, volunteers may visit patients in their homes, at care facilities such as Helen Porter and Porter Hospital, in ARCH rooms, and local retirement communities. 

Hospice volunteers represent the larger community, each time they cross a threshold, communicating to patients and families, “You are not forgotten by your community.  You are not alone.  You are important even in your last months, days and hours of life.”

Some community members are called to become hospice volunteers because a loved one received hospice services and they wish to return, in spirit and action, what was once given to them.  Others simply feel called to do this kind of service.   Each volunteer’s story and gifts are unique and valued. 

HVS welcomes inquiries about becoming a hospice volunteer.  ~Priscilla Baker,


“HVS volunteers provide a unique complement to the care of our patients and residents at the end of life, about half of whom are on hospice. Whether it is providing flowers, sitting vigil when family cannot be there, playing the harp, singing over or helping with the transition in and out of the hospital or ARCH rooms, HVS volunteers make a difference. After someone dies, the HVS “Journey with Grief” support group can be a wonderful aid for families.” -Rev. Matt Wollam-Berens, Chaplain at Porter Hospital and Helen Porter.

“Volunteers enhance the quality of life for our patients and families.  My favorite story is about a gentleman who had size 15 feet and who was always cold. We let the volunteers know about this, and the next thing we knew, we had received numerous pair of hand-knitted wool socks for him. It was an amazing example of how the volunteers went out of their way to make a gentleman who they would never meet more comfortable at the end of his life.”  ~Marcia Wheeler, Director of Hospice Services at ACHHH