Firefly Sisterhood was given an opportunity to share the story of Judy Erdahl in this blog/podcast series, An Advocate to the End, and we do so intentionally (Firefly believes in honest and open conversation about breast cancer topics) and with great reverence.
It has been difficult and uncomfortable, as Judy is in hospice after stopping treatment for Metastatic Breast Cancer. But it has also been tender and beautiful, as Judy and her group of supporters share their mutual grief and gratitude. This dichotomous nature of our human experience brings to mind an ancient poem:
“To every thing there is a season. . . .
A time to be born, a time to die;
A time to plant, and a time to pluck up that which is planted;
A time to hurt, and a time to heal;
A time to break down, and a time to build up;
A time to weep, and a time to laugh;
A time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together;
A time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose;
A time to keep, and a time to cast away;
A time to rend, and a time to sew;
A time to keep silence, and a time to speak;
A time to love, and a time to hate;
A time of war, and a time of peace.”
Anonymous (Ecclesiastes 3:1-8, Bible)
As with all life, there truly is a time that we are all born and a time that we all will die. It is a difficult, fear-filled, and uncomfortable topic to talk about – death – but an important one, nonetheless. As this poem suggests, in death there is weeping, mourning, embracing, silence, love . . . and yes, even peace. For those dying as well as those who are the caregivers, loved ones, and supporters.
“Many factors influence the emotions that surround the end of life,” begins Hella Lange, Death and Dying Professor at Normandale Community College. “Sociological issues such as whether someone is alone or surrounded by loved ones, if they have health insurance or not, if they have money to afford quality health care, their age, if they have children or dependents, and if there is unfinished business or unresolved conflict with family members.” Hella continues, “Of course, the severity of the illness plays a huge part as well. If that person is incapacitated, if they are able to move and get around or not, if they can talk and communicate or not, and the length of time that the person has had the illness or is in hospice.”
Many people use the terms “hospice” and “palliative care” interchangeably when talking about end-of-life care, but Hella points out that, “Palliative care is comfort care that can ease suffering during any difficult illness and especially during treatment for life-threatening and terminal illnesses. Hospice care is specialty care for the terminally ill patient with only a few months life expectancy. Once in hospice, clinicians stop active treatment for the illness, focusing on making death and dying comfortable for the patient and their family.”
Karla Klotz Raway (MSW & LICSW), a Hospice Social Worker, adds, “Hospice is a philosophy of care, not necessarily a place. We see people in hospice residences as well as in their homes and apartments and in assisted living and nursing homes. It’s really about being ready to accept the mindset of comfort over curative, life-sustaining treatment.” She continues, “The word ‘hospice’ has such a negative connotation. But we’re there to enhance quality of life, to work with our clients on their goals for the end of their life, and to help them feel good so they can do the things that they want at the end of their life, such as meeting a friend for lunch.”
That “we” Karla is referring to includes a large interdisciplinary team that can be made up of: registered nurses (RNs), licensed practical nurses (LPNs), home health aides, social workers, doctors, pharmacists, nurse practitioners, chaplains, volunteers, and therapists (music, art, aroma, massage, pet, and counseling). Karla reports that this team approach ensures a “whole person perspective” of holistic care to manage symptoms: physical pain (through medications and consulting with physicians), emotional pain (working towards reconciliation with other family members or concerns for loved ones they will leave behind), shortness of breath (with medication and oxygen), and anxiety (emotional support, medications, non-pharmacological methods such as music, massage, and aroma therapies).
“Often we hear patients say their doctors gave up on them, or there are no more treatments for them,” laments Karla. “We like to reframe hospice as being a treatment in its own right—that there are things that can still be done—emotionally, physically, and spiritually. It’s a big step to acknowledge and change one’s mindset from cure to comfort, quantity of life over quality of life.”
Denial, Anger, Bargaining, Depression, and Acceptance. We typically think of these as the stages of grief. However, Hella points out that, “These five emotions were first observed and documented in 1969 by Dr. Elisabeth Kübler-Ross in her work with dying patients.” In her book, On Death and Dying, Dr. Kübler-Ross noted that patients often experience these emotions in stages, with some individuals experiencing them in sequence, others in varying order and some skipping stages altogether.
Individuals who are in hospice experience tremendous grief. “Grief is the last act of love we have to give to those we loved. Where there is deep grief, there was deep love,” (Author unknown). Perhaps it is heartening to know that the more we love someone, the more enormous the grief is which we will feel when we approach the end of our lives or when our loved ones approach theirs. This is to know that we have loved deeply rather than to not have loved at all.
How to Help
Grief can be paralyzing, for the person in hospice as well as their caregivers, friends and family. If you know someone who is in hospice, Karla suggest that you “be open to helping them or their family.” She adds, “It is a good idea to consider—ahead of time—what way you are willing to help. Are you comfortable providing hands-on care, running errands, bringing meals, or sitting with that person? Tapping into your “gifts” and comfort level is important.”
And when someone has passed away, helping can be even more important. “It used to be the custom for people to wear black for a year to communicate to society that they were grieving so people knew to be considerate to them during this time,” remarked Hella. Today, in a world where bereavement time off from work can be as little as 3 days and only for certain people who have passed—like children, parents, and in-laws—Hella suggests “giving someone who is mourning extra space and time to heal. Ask them how they are doing. Bring them food and flowers. Show up and do those things that were done by the person that passed—mowing the lawn, doing laundry, taking care of kids.”
Hospice and end-of-life care are important topics to talk about, for which we do not have enough blog space to do justice. The following resources are just a few of those available if you would like more information:
Minnesota Network of Hospice & Palliative Care: offers resources and information for people living with a serious illness or experiencing the end of life.
Brighter Days Grief Center a Minnesota nonprofit offering events and programs for children, youth, young adults, and adults anticipating or coping with the loss of a loved one.
Senior Linkage Line is a free service of the state of Minnesota that connects older Minnesotans and their families with the help they need.
Pathways Minneapolis is a Minnesota nonprofit that offers classes, events, and programs for those facing a traumatic illness as well as their loved ones.
Angel Foundation is a Minnesota nonprofit that offers Facing Cancer Together programs for children and parents with cancer.
Grief Support Groups: a list of Twin Cities support groups that meet regularly.
BOOK: Being Mortal by Atul Gawande: “A practicing surgeon, Dr. Gawande examines his own practices as well as others’-as life draws to a close. Being Mortal shows how the ultimate goal is not a good death but a good life-all the way to the very end.”
PODCAST: Krista Tippett, in her On Being podcast, interviews Atul Gawande about Being Mortal. The interview starts with Dr. Gawande, “People have priorities besides just surviving no matter what. You have reasons you want to be alive. What are those reasons? Because whatever you’re living for, along the way, we’ve got to make sure we don’t sacrifice it. And in fact, can we, along the way, whatever’s happening, can we enable it?”
BOOK: We Know How This Ends: Living While Dying by Bruce Kramer and Cathy Wurzer: “This book is far more than a memoir. It is a dignified, courageous, and unflinching look at how acceptance of loss and inevitable death can lead us all to a more meaningful and fulfilling life.”
PODCAST: Living While Dying: An ALS Story by Bruce Kramer and Cathy Wurzer: Bruce Kramer was dean of the School of Education at the University of St. Thomas. He shared his journey with the incurable disease with MPR News Morning Edition host Cathy Wurzer.
Thank you to Judy Erdahl, Team Judy members, Hella Lange, and Karla Raway for sharing their experience with end-of-life care. We are extremely grateful that Judy offered to start this important and difficult conversation for this series.
Written by Amy Tix, breast cancer survivor and Firefly Staffer. “Although it has been over a dozen years since my own diagnosis, this was an extremely raw topic to interview for, write about, and consider – so much so that it cropped up in my dreams.”