Live with Purpose - November 20, 2023

Honoring Hospice Month with Courageous Conversations

by Susan Douglas, daughter of Clare Fieldhouse

Introduction

As we honor hospice month at Goodwin Living, we are touched by the following “Courageous Conversation” that Susan Douglas offered to have with us. Susan lost her mother earlier this year and took time to answer questions and share what she and her family experienced while receiving end-of-life care.

How did you feel when you/your loved one initially began conversations about choosing hospice care?

My mother was suffering from dementia by the time we engaged hospice care for her, so she did not discuss it with us at the time. From conversations we had had over the years with her about death, dying with dignity and being ready for death, my siblings and I all knew that this was the path our mother wanted.

What does a courageous conversation mean to you?

A courageous conversation is one that is honest and open, particularly when it is about something uncomfortable. It is also necessary.

My family always talked about death openly. At first, these discussions were uncomfortable for me and my siblings, and we rushed to finish them. After many years of hearing our mother speak openly about death being natural, inevitable and not something to be afraid of, we grew more comfortable with the topic.

By the time she realized her brain was slipping away (about 10 years ago) our mother made it very clear to each of her children that we were to do absolutely nothing to keep her alive once her time came. We all agreed we would honor that wish, and we worked hard to ensure that her death was dignified and not prolonged.

These frequent, honest and often uncomfortable conversations have prepared us to hold similar discussions with our own children. Doing so will help them be prepared for our own demise. This is important for every family, and every generation.

If you could tell people one thing about hospice that you think they don’t know, what would you say?

Two things, actually. The first is that hospice is a service that is free to anyone who has Medicare A. Many people I spoke with during the time my mother was in hospice care told me that it must be very expensive. I repeatedly corrected this misperception.

Second, I would let people know that in a hospital or nursing care setting, it is natural for staff to have lifesaving as a goal. This is what hospitals and nursing homes do. Through medicine and technology, doctors and nurses work to extend life. At a certain point, though, quality of life is missing, and this is where hospice is so valuable. When a patient no longer has quality of life, or is terminally ill, the goal should be to provide comfort care and dignity – and these are things that hospice care is able to provide. Additionally, hospice is a great support for the family.

What does hospice mean to you?

Hospice means caring for a person who is approaching death in a way that ensures their comfort and dignity. Hospice supports family members who may find the process difficult, giving them the strength to face this journey. Hospice is a gift for both the patient and the family.

Can you describe the care team?

The Goodwin Hospice team had many parts.

• The social worker was in touch with me regularly to see what my mother might need and to see how I was holding up.
• The nurse visited regularly and updated me on how my mother was doing – whether she was having a good day or bad day. She helped me understand the different stages that my mother was going through. Towards the end, I was able to text with the nurse to get quick responses and guidance. This was especially important because my mother was at an assisted living facility where the staff were not well trained in end-of-life care. The nurse treated my mother with great tenderness and dignity at all times, even after she passed, when she lovingly brushed her hair and arranged her on the bed, which was a true gift to witness.
• A massage therapist visited my mother on several occasions, though my mother was not able to verbalize her reaction. I was glad to know that she had these visits.
• The end-of-life doulas were amazing. They took the time to speak at length with us and provided valuable insight into what my mother might need. It was a true blessing to have them spend time with my mother when we could not. They were very engaged and honest, and they communicated with us so well. This is an invaluable service, as the nursing staff simply cannot always be present.

Can you tell me a little about your experience with Goodwin Hospice?

Goodwin Hospice provided exactly the care we needed for my mother in her last months of life. The entire team was respectful, helpful and straightforward while providing such lovely, tender care for my mother. Communications were good and usually timely. We could not have been happier with Mino, our nurse, and the end-of-life doula service that was provided helped us all immensely.

The Goodwin Hospice staff made every effort to know what would comfort our mother. We were asked about her spiritual needs, her passions, music, etc., so that my mother would be surrounded and supported by what she cared about most. The little booklet that we were provided was also very helpful; it detailed what a dying person experiences and helped us to recognize and understand the changes that were taking place from day to day.

Goodwin Hospice accompanied us through one of life’s greatest challenges and we will be forever grateful for the compassion they showed every step of the way.

Can you provide a story or specific memory regarding your experience with our end-of-life doula care?

I spent a lot of time with my mother in her final days. One morning, the assisted living staff fed my mother and then had her lie down. My mother immediately aspirated, and I was there to hear the horrible sounds she made as she tried to clear her lungs. (The staff were then instructed by the hospice nurse to stop all food and water.) It was a very difficult and frightening moment for me. After that, I was afraid to leave my mother’s side.

That evening, as I sat with my mother, the doula (Jane) called me to introduce herself and to arrange the best time to sit with my mother on the following day. Jane was generous with her time that evening, and we had a lengthy talk which was very supportive.

At one point, I told her I was exhausted but that I felt the need to stay with my mother because she seemed too fragile to leave alone in the care of the assistant living staff. Jane took the time to help me understand that caring for myself was also important and that very often, particularly with strong and independent people like my mother, they actually need to have some privacy in the dying process.

These words were of great comfort to me, as was knowing that this kind, gentle and insightful woman would be with my mother the next day. Jane truly brought me great comfort and made the next three days much easier.

Courageous Conversations

Profound honor describes the feeling we have in being able to come alongside people at a time of need so intimate and significant as end-of-life. We’re honored that Susan and her family chose Goodwin Hospice, and we’re honored that Susan agreed to engage in this courageous conversation with us and share her experiences.

If you or someone you know is looking for hospice care, please reach out to us at any time by calling 703.578.7108