Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

St. Joseph's Manor
Trumbull, Connecticut
AHA Circle of Life Award Winner, 2001

Bedside Vigils, Remembrance Boxes, Sympathy Cards:
Practices that Support Families and Staff

In 1997, Sister Michelle Anne Reho, the administrator of St. Joseph's Manor asked the leaders of each department if they were interested in joining a focus group to look at end-of-life care at our nursing home. The ensuing Compassionate Care Focus Group was composed of eight people from a variety of disciplines and roles at our facility. I believe that because of the make-up of this group, our focus looked not only at the needs of residents and their families but also at the needs of employees.

We felt we needed to give employees a way to acknowledge the grief and loss that they feel after caring for a resident throughout the last part of the resident's life, sometimes for more than a decade. The focus group decided on a three-prong approach. 1.) We invite the employees to be part of the final vigil, to support the resident and their family during the last days. We post a special symbol on a resident's door when it is clear that a resident is in his or her final hours, which alerts the staff to come in and say their goodbyes. 2.) After a resident dies, we post a picture and their name in a remembrance box for about two weeks at the nursing station. The remembrance box is a shallow box 17 inches high, 16 inches wide, and 5 inches deep and serves as a gathering point where employees can share memories of times spent with the resident. 3.) Finally, all staff members are invited to sign a simple sympathy card and to say their goodbyes to family members who have become frequent (sometimes daily) visitors. Our sympathy card is made from a folded sheet with a picture of nature and the words "To everything there is a season" on the front. Inside, we write an appropriate verse, leaving lots of white space for signatures and comments from staff. This is mailed out about 1-2 weeks after the death. In addition, on the two floors where the residents are more able, we have a memorial service in the main sitting area where residents and staff alike can pray and talk about their favorite memories.

With these three simple practices, we hoped to enhance the quality of life of our staff, in addition to helping the families of patients continue to feel connected to us. I've asked the following staff members to reflect on the impact of the changes brought about by our Compassionate Care Focus.

What follows are four short reflections written by staff at St. Joseph's Manor on the impact of these new practices on their lives.

My name is Mitch Gilbride and I have been a certified nursing assistant for eight years. Prior to coming to work at the Manor I was employed at an acute care hospital in New Jersey. I had a difficult time with death in the curative environment, probably due to my own history of having lost my father at the age of 12. I never wanted to attend wakes or funerals because I thought I only wanted to remember people during the good times and to avoid what I thought was ugly.

To help me make sense of these experiences, I have developed my own theology that helps me cope with my grieving. After working here at the Manor and seeing how other staff members handle death, I now feel the leap to the next life is not immediate and that the loss is kindly, and gradual. As Jesus, after his resurrection, stayed on earth 40 days to calm, inspire, and goad on his followers, I believe our departure may be postponed as well to see the needs of our loved ones – especially the pain of loss as each fond memory leaps to the surface.

Recently, I put words to these feelings in a poem inspired by a conversation with a resident who is a fellow poet.

I am older now and playing out my part
All loved ones gone and friends now depart
Yet as I remember, and most things from the start
I cannot help but know they live on in my heart.
The little lovely things they said are whispered in my soul
And many times I sense them signaling out my goal.
They've left, it's true and it's true we are apart
But all they've meant and all they've cared
Leaps daily from my heart.
Once it's true, we said goodbye
But daily, it's true, I shout: Hello

As a result of this new theology of mine and true to what I expressed in my poem, when I am not with a resident at death, I visit their room as soon as possible and say not goodbye but hello and goad them on.

The vigil, the deceased's honor frame, and the memorial service all remind me that I am not in a cure-oriented environment but in these residents' home—companioning and caring for those on their final pilgrimage. In the memorial service, we close ranks and together feel the sense of honor to be able to walk the resident through the roughest part of the race –the finish. It is almost like waving from a window as someone slowly leaves the driveway with the conviction we will be together again!

My name is Evelyn DeJesus and I am a nurse manager at St. Joseph's Manor. I would like to share an experience with you that changed my life and my feelings about death. I recall entering work one particular morning—I had a busy schedule, piles of paperwork on my desk, a list of residents to be seen and my stats were past due. I decided to visit with a resident I'll call Mrs. G. She had been placed on comfort measures and was in her final phase of the dying process. Working at St. Joseph's Manor for almost nine years, I've witnessed many deaths. The end of life was always difficult for me whether it was a family member, a friend, or a resident. That morning as I walked into the room Mrs. G. was lying motionless in her bed. Her daughters had spent the night and were at her bedside. I had known the G family for some time and they had become like a part of my family. As I greeted them with a hug, I could not ignore the sense of calmness and love that emanated from the room. I sat with them and we reminisced on past experiences. At that moment, I realized that death was a positive thing and not the horrible situation that I had always imagined it to be. Although I had been educated in the Catholic school system, it wasn't until this experience that I realized, we really do enter into a better place. I sat with the family and when I returned to my workload for the day, I had a different perspective. The following day Mrs. G. passed away and I felt relieved. As I passed the remembrance box and saw her picture, I didn't recall the end of her life but all the different interactions throughout her life at the Manor. I was amazed that my reaction of sorrow had changed and death was no longer the end but the beginning!

My name is Ed Paradis and I am the Director of Environmental Services at St. Joseph's Manor and have worked here for the past 14 years. While there are supervisors to handle the day-to-day operations, I am involved in all aspects of the housekeeping and laundry departments. I've been a part of the Compassionate Care Focus group from the start, with my original purpose being to foster a more home-like atmosphere. I recently had a more personal look at the outcomes of our efforts. My mother-in-law had been a resident here and was in her last days. She had been sent to the hospital for diagnosis. She had a DNR order and this request was being honored. The hospital doctor was reluctant to allow her to return to St. Joseph's Manor. My wife asked me what she could do to get her mother back "home." I told her to call Nicole (Charpentier) the Director of Social Work at the Manor for advice. When my wife explained the reason for the call, Nicole told her that we want all our residents to spend their final moments at home (St. Joseph's Manor) where they are cared for by people who know and love them. The use of the possessive pronoun really impressed my wife. I told her that's how we feel here – possessive, these are our residents, our family!

After my mother-in-law died (at the Manor, of course) and after a respectful amount of time, a number of staff members came to say goodbye, to offer my wife sympathy, and to express how much her mother meant to them. I had often wondered in the past if this practice was intrusive or not, as it seemed that it could be. I asked my wife and children (who were also there) how they felt. I was not prepared for how emotional they became. They were so impressed by the outpouring of sympathy and nice words from staff, that they knew the struggle to get her back to the Manor was well worth it. Intrusive was not a word with meaning on that day.

My name is Annette Pettway and I am a lead housekeeper at St. Joseph's Manor. I have been with the housekeeping department for the last 15 years. This was my first full time job right after high school. My job is to make sure the residents' environment is clean, safe, and homey. During my early years at the Manor, I thought that since this was a nursing home, the residents had already lived their lives and just come here to die and that was it. Before the Compassionate Care Focus Group started, the mission here was always to let the resident die with dignity and respect. We would accommodate our routines as needed. An employee could usually tell when a resident was about to die because the pastoral care staff or the priest would go in the room and spend long periods of time with the dying resident and their family.

As the Compassionate Care approach took hold, I developed a whole new outlook on death. I had never thought of death being so relaxing and peaceful for our residents and their families. The remembrance box helps the staff identify the resident that has passed. Looking at the photo of the resident's face in the box gives me a moment to have a personal goodbye. I take the time to stand in front of it and say a prayer.

The angel on the door is the sign that this is the end. I know that as an employee I have done my best to help this resident as much as I could. I know a part of the resident's history because of the stories many tell and I know I was part of that history. We try to make the family as comfortable as possible because we know this is final and when the room is filled with family and love, the dying process can be complete. It makes me happy to know that I can be part of the last days of the resident because we are a family here at the Manor.

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