By PATRICIA CORRIGAN
Having worked 38 years as a nurse — nine of those years in palliative care — Peg Nelson-Bander, a nurse practitioner with advanced certification in hospice and palliative care nursing, knows a thing or two about how to reduce suffering in those at the end of life. From that knowledge, she has distilled what she calls the "Three Sacred Truths" about suffering and serious illness.
The director of Pain and Palliative Services at St. Joseph Mercy Oakland in Pontiac, Mich., Bander teaches these truths to clergy, laypeople and medical personnel in a program she delivers in churches, synagogues, community centers and hospitals. To date, her message has reached hundreds of individuals.
Peg Nelson-Bander
Bander recently spoke to Catholic Health World about palliative care, her program and her career choice.
What's the difference between palliative care and hospice care?
Palliative care is a specialty, a support system for people with serious disease who will not get better. "Palliative" comes from the French word "palliare," which means to cloak or to cover, so I explain to patients and their families that palliative care means we will put our arms around them, help support them.
We talk about the pros and cons of treatments, about symptom management and about understanding the illness. We say we're walking along with you. And we will bring it up when it's time to think about hospice care.
Hospice care helps people ready to let go of further life-sustaining treatment, so you can think of hospice as the end part of palliative care. Still, only approximately 30 percent of patients get to hospice care before dying.
What is the first of your Three Sacred Truths?
Truth One is that there will be suffering near end of life, but it shouldn't be related to management of pain or other symptom management. There are so many phobias about opiates now, so many untruths. Medical literature for end-of-life patients indicates that the use of pain medications can prolong life.
And the second?
There will be suffering near end of life, but it shouldn't be related to lack of understanding the disease process and your prognosis. People don't always understand these. Often, they don't know how to talk to a doctor, or even how to choose a doctor. In my talk, I tell a story about a man who thought he was dying but was not, and another story about someone who was much sicker than he realized.
What leads to the confusion about the disease process and prognosis?
I call it a surplus of trust. Too often the doctor thinks the family will talk to the patient about a prognosis and the family thinks the doctor will — and no one does. Then no one can advocate for the patient.
What is the third truth?
This one is the most important. Dying is uncomfortable and sad and scary, and there will be suffering, but it shouldn't be related to a lack of expressing your love, your fears and your wishes about treatment. I talk about how to speak to loved ones about expressing fears. End of life is a time of power that people can create for themselves. If you've been mad at your cousin for years, this is a time to say, "I am sorry," or "I forgive you."
When did palliative care become available at St. Joseph Mercy Oakland?
We started it in 1999, and we called it Mercy Supportive Care, Palliative Care and Pain Management. We're a 443-bed community hospital in Oakland County, Mich., and the administrative leadership has been supportive from the beginning. Palliative care should be a pillar in Catholic health care, with a priority to reduce suffering and tend to the dying.
What led to your interest in palliative care?
In 1980, I started in critical care as a nurse and my focus for 15 years was advanced life support and resuscitation. While working on my master's degree, I did research on how to save people and studied the outcomes of resuscitation. Until the mid-'90s, nurses were not allowed to use defibrillators — we had to wait for a doctor, which took a lot of time. I went to our leadership about this, and we put defibrillators on each floor and trained every nurse to use them.
What happened next?
I started looking at the patients we were attempting to resuscitate, and my research showed that 60 to 70 percent of the people who died at our hospital were in their 80s and 90s, with advanced disease, and 40 percent of them had long stays in the intensive care unit.
Then, after a study from the Institute for Healthcare Improvement showed that too many people died poorly, everyone jumped on the bandwagon, saying we have to concentrate on attempting resuscitation in those people who have a chance to recover. That's when the idea of palliative care began to emerge, and I got very interested in what we could do for people with terminal illness. Our palliative care service was the second in the country to receive certification from The Joint Commission.
What does palliative care look like at your hospital now?
We have a team that includes nurse practitioners, a medical director, pharmacy, social workers, chaplains and integrative healing practitioners. We also have a No One Dies Alone program, where volunteers sit with people if there is no family or the family is exhausted. We create a sacred space, a loving environment, with music, aromatherapy and homemade blankets. And we follow up with families with bereavement services.
What message do you most want to share with readers about palliative care?
I want people to understand that the end of life is an opportunity for peace and healing for people if you do it right, but many never get that opportunity unless they understand their illness and we talk with them about it.
What have you learned from doing this work?
This is beautiful work, and my biggest teachers have been my patients and their families. Also, even when illness is not present, it's good to start living fully, enjoying your life, making the most of each day. Life is about living well until you die.