Abstract
At our hospitals, comfort care quilts are part of an effort to change the culture of end-of-life care. We clinicians have been touched by many quilt stories. The quilts are sewn with donated materials by volunteers, many of whom are current and retired staff and their family members and friends. When the volunteers (who include some of the authors) are sewing the quilts, they often wonder who the recipient will be, and how it will bring comfort. They usually don't have to wonder long; it is astonishing how often a quilt ends up perfectly matched for the patient. This includes quilts with very specific themes—like tractors or gas pumps or chili peppers.
I was asked to support the spouse and son of a patient in her 70s. The family wasn't very talkative, so I told them that the volunteers and staff would like to offer a gift of a quilt to make the room homier. Since they had shared so little about the patient, I asked what her favorite color is, and they said red. Back in those days we did not have a lot of quilts to choose from, but I did find a red one with images of quite large long-haired gray cats printed on it. I thought, “well this could go either way.”
When I brought it into the room and placed it over the patient, both the spouse and son started talking at the same time. They told me that the patient had a long-haired gray cat named Smokey that she was still grieving for years after his death. They talked more about that cat and the patient's connection with Smokey than they had talked to staff in all the time the patient was with us.
While decorating the hospital room for the holidays, a patient's wife and three daughters told us about his passion for singing challenging pieces in his clear tenor voice. It was easy to find a quilt with music notes/scales on it—-one for him was red, black, and white and very beautiful. But I wanted each daughter to have a quilt, so I also brought the one with chocolate covered pretzels because I thought the girls would like a quirky fun quilt. When I gave the quilts to the patient's spouse, I first showed her the music one—she was so pleased and touched that we had listened and remembered that her husband was a musician. When I gave her the pretzel quilt, she made a sound somewhere between a sob, a laugh, and a gasp. The patient's special treat he shared with his daughters was pretzels.
During a family meeting, the 12-year daughter of a patient hugged her sock monkey all through the discussion. The discussion ended with a decision to transition to comfort measures only, and I went to get a quilt and was so excited to find one with sock monkeys on it right on top of the pile. The patient, his wife, and especially their daughter had a moment of joy and surprise on one of the most difficult days in their lives.
We clinicians have the privilege of figuring out who is perfectly matched for each quilt. Through questions about favorite colors and activities, we learn rich details about the patient and family—their interests, their tastes, and funny stories. When we present the quilt, they often point out something striking that prompts more stories. This adds to our understanding of the patient's narrative and contributes to their legacy.
She had struggled for so long with an illness that robbed her of precious time with her young granddaughter. Talk of leaving her was unbearably hard. And she was so tired of all this. When I asked her “What is your favorite color?” she smiled and was emphatic with “pink.” “Any other favorite color?” “No, only pink.” To my amazement, I found a quilt in every shade of pink imaginable. Her joy and delight in receiving this beautiful very pink quilt touched me deeply. The next day she had it on her lap as we discussed hard preparations for the very end of her life. She looked at me, smiled, patted the quilt, and said, “I love it.” Her granddaughter will have the gift of a quilt for the rest of her life; the quilt her grandmother loved.
I gave a quilt to a very courageous and inspiring woman facing the end of her life in the hospital. I asked her what color quilt she would like and was surprised when she requested black because “black goes with everything.” I set out in search of a black quilt, not anticipating having much luck; however, I found the most gorgeous deep purple quilt with black outlines throughout. She loved the quilt and commented frequently on its beauty. She shared that it brought her comfort knowing that her husband will be able to sleep with it after she's gone.
The quilt chosen by or for a particular patient becomes a part of the patient's story and reflects the unique qualities or narrative of that patient. Quilt stories like these are often the highlight of our day and bring meaning to our work. The quilts and the stories they inspire help promote a healing culture for end-of-life care. When telling their stories, sometimes patients and family members reveal they are quilters.
They were far from home and grieving the quick decline that left her unable to communicate with them. Her daughter shared that she and her mother were expert quilters and had won an award at a prestigious quilting contest. This made us very nervous about choosing a quilt. When we brought the quilt, her daughter told us a favorite designer of theirs had designed the fabric! She was fortunately able to be closer to home and loved ones in her last days.
Another patient who was faced with many undesirable options for medical care, including high-risk surgery, remarked that receiving a quilt “made [her] day.” She was a quilter and had been experiencing intense grief over her situation and the possibility of not being able to get back home.
When clinicians give the special gift of a quilt, it often brings the humanity of the patient and our own humanity to the forefront. This is a nonclinical moment in the midst of days often filled with the clinical.
The adult children of one woman told me that they planned to cut the quilt up into four pieces because they all wanted a part of it. They all got along and loved their mother deeply. My quilter heart skipped a beat at the thought of it being cut up, so I offered to bind the cut edges for them. They politely declined because, “We want others to see the cut edges and realize that our piece of the quilt is only one part of it—- so many people love our mom that we needed to cut up the quilt so everyone gets a piece. The raw edges are like our grief.”
I was at the bedside of a woman who was dying. Her spouse of 48 years was holding her hand and on her bed was a deep green and purple quilt. She asked that the quilters be thanked for such a beautiful quilt. As she became sleepier and we thought close to death, the patient said to her spouse, “I love and will miss you, but you will miss me more.” And he said, “You are right——yet another argument you win!” which made her smile. We thought those would be her last words, but then minutes later she said to her spouse, “Be sure to take this quilt. It is a gift and it will bring you comfort when I'm gone.”
After receiving the gift, families carefully unfold the quilt and spread it over their loved ones. The room feels transformed. Then after a patient has died, the family takes the quilt home with them, which can be an important comfort for a family member now leaving the hospital without their loved one.
One of the most difficult aspects of death after traumatic injury is the suddenness. Someone goes from a full day with family, has dinner, mounts his motorcycle, and within a matter of hours is gone. As a trauma surgeon, I have the weight on my shoulders to tell the family there was nothing more I could do. Despite our best efforts, we couldn't save him.
Recently, I brought a quilt with me as I gave this terrible news. His mom yelled at me, railed at how she didn't believe me, screamed a primal scream at the loss of her son. I pulled out the blue quilt I had hurriedly selected before our meeting. The family looked at me as I explained I had made the quilt and it was the last thing I could offer to try and give some comfort. After I finished my explanation of our quilting program, his family gathered around me for a hug, and ended up comforting me. His sister said blue was his favorite color and she thought the quilt made him look at peace. We shared our grief at the senseless loss of a life, taken too soon.
Conclusion
The comfort care quilts are part of a larger effort at our hospitals that aim to provide quality end-of-life care for patients and families as well as contribute to clinician resilience. The comfort care quilts are a gift for our patients and families experiencing many challenges and losses, and giving the quilt is a gift for us clinicians who experience many losses, in both our professional and personal lives.
Footnotes
Acknowledgments
There are many other people who have their own meaningful quilt stories—the volunteers who donate time, materials, and money to our quilting programs and the other faculty and staff who give patients and families the special gift of a quilt. We would like to thank them for all they do!