The Caregiver's Cairn: Hospice Is About Hope

Blog by Jane Barton

Greetings one and all...

Welcome back to The Caregiver’s Cairn - a sustaining and empowering guide for caregivers and care receivers. I hope you and yours have enjoyed a lovely month since my last posting. Once again, I invite you to pour a cup of coffee or hot tea, curl up in a cozy chair, and take a deep breath. Today, I want to chat about a philosophy and model of health care that offers tremendous hope to patients and families at the end of life - hospice. Perhaps you have never thought about hospice as hope ful. If not, I invite you to reconsider this concept and model of care. Since November is National Hospice and Palliative Care month, our timing couldn’t be better!

Let’s begin by defining the basic terms fundamental to our discussion - palliative care and hospice. Palliative care is a philosophy of health care that recognizes cure is not always possible, but care always is. For people with serious, chronic, or terminal illnesses, curative and palliative (comfort) interventions ensure the holistic care of patients and their families. Hospice is a type of palliative care reserved for terminally-ill people with a prognosis of six months or less.

Hospice is a word that strikes fear into the hearts of many people. The fear emanates from our lack of knowledge about hospice care as well as our societal aversion to death and dying. People equate hospice with death; there is nothing more to be done. Thus, hospice means hope less. Granted, by definition and design, hospice is a type of care designed for the terminally ill. There is no hope for cure. However, that doesn’t mean the situation is hope less. By working with patients and families, hospice professionals determine what is meaningful and life giving for each person. A collaborative plan of care emerges that is infused with hope of all kinds:

• the hope to stay at home
• the hope to be surrounded by friends and family
• the hope that pain and symptoms will be well managed
• the hope that surviving family and friends will be supported and comforted
• the hope for guidance, companionship, and support until the end of life
• the hope for competent and compassionate care

Consequently, from my personal and professional experience of hospice, hospice is all about hope! We need not fear hospice. Instead, we must overcome our fear of death and dying in order to embrace this life-giving approach to health care.

We fear the unknown. Hence, education serves to mitigate our fears. I invite you to learn more about hospice and palliative care by exploring the informational resources provided by the National Hospice and Palliative Care Organization ( www.nhpco.org) and the Hospice Foundation of America ( www.hospicefoundation.org). As you explore the websites, you will discover that hospice is not about how you choose to die. Rather, hospice is about how you choose to live. In my opinion, that is hope- full indeed!

Thanks so much for stopping by today. I invite you to share your perspective on the caregiving journey. Make suggestions. Pose questions. Provide resources. Share your story. Coming together and sharing, we will improve the process for one and all. I look forward to continuing the conversation next month. Til then, blessings to you and yours...Jane W. Barton

Do you have a question for Jane? Please email us at coaarp@aarp.org and we will be in touch soon!

 

Jane W. Barton, MTS, MASM, CSA is a passionate speaker, writer, and listener. Jane is the founder of Cardinal, LLC, a consulting firm that provides educational programs to assist people in confronting the daunting challenges posed by aging,  serious illness and disability. Jane is well-versed in the areas of grief and bereavement, caregiving, hospice and palliative care, change and transition, and spirituality and health. She presents innovative, transformational programs to community members, healthcare providers, pastoral caregivers, clergy, funeral service providers, and national audiences to improve the experience of people and families challenged by serious, advanced, or terminal illnesses. Previously, Jane served as Director of Education for a hospice and palliative care educational institution. She has also served as a hospice chaplain and bereavement facilitator in hospice and palliative care. Jane is a certified Spiritual Director as well as a Certified Senior Advisor. In a former life, she worked as a financial services representative and an exploration petroleum geologist and manager.