Supportive Voice Vol. 10 No. 3 Fall 2004 / Winter 2005
by Carol Faller, RN, MPH, CCM
Carol Faller is nurse care coordinator, PeaceHealth Medical Group, Eugene, OR. She has worked in health care for 30 years, the last five years supporting family medicine and internal medicine primary care practices.
The PeaceHealth Care Coordination Service is based within primary care practice teams. The program's mission is to empower patients to make informed decisions that will optimize their physical, mental and spiritual health; to enhance communication and coordination among patients and providers; and to facilitate patients' ability to access appropriate care and community resources. The nurse and social worker Care Coordinator's focus includes working with patients who have multiple, unstable chronic conditions and/or life-threatening illnesses.
Amelia's story underscores the importance of having services available for patients who have potentially terminal diagnoses but are initially not eligible for hospice. The confusion and emotional distress that can occur during this pre-hospice—pre-terminal—designation period can be traumatic for patients and their families. Support from a professional with both a medical and a mental health background, who has the flexibility to be with the patient where and when the need arises, increases the likelihood that critical discussions can occur that lead to care decisions congruent with patient wishes.
The Family's Voice
My introduction to the patient and to three members of the family was brief. They needed help managing the details of Amelia's home care, transportation, and communication of symptoms to local and out-of-area doctors. They needed someone who wouldn't question their commitment.
"She loves us beyond measure. She has been there to support, to bring joy, to console, and reassure and to manage. We cannot imagine our lives without her. Whatever she needs, whatever it takes, we will give it.
"The doctors say the chances of survival are slim, ten-twenty percent? It doesn't really matter as long as there is a chance. The doctors say it will be tough. The treatments will attack her healthy systems, as well as the tumor, and might last over a year.
"She tells us she will do it. She knows we love her. We tell her we will be with her. When she feels sick, we will care for her. When she feels desperate we will give her hope. When she is sad, we will love her. And so we start. Husband, three daughters, one son, grandchildren, extended family, and friends committed to the love we feel and long to show.
"It's been only three months. She is suffering so. Her hair, her skin, her features have all changed. She barely walks. Her voice is so quiet, and it takes her so long to form her words. It is a shock to see her, but we know her beauty.
"The burdens are enormous, but we assume them willingly. The trips to the doctors' offices and to the hospital are more frequent. There is harshness in these medical settings. There is also criticism. There is talk of futility. But we are there, advocating with strength and determination as we had promised. We will be the anchors during this roughest time. If not us, then who?"
The Care Team's Voice
My conversations with the primary care provider, with the home health nurse, with the infusion therapist, with the oncologist, with the ER doctor, and with the hospitalist were filled with emotion. They asked, "What can I do? What should I do? How is this family interacting? How can I best interact with them? Who is in charge? What in the world is happening here?" Each provider told me how being involved in this case was professionally and personally challenging.
I cannot remember who called first. The home health nurse? The family? The PCP? Blood studies aren't good, respiration is poor, cognition is declining, the patient is suffering; yet another hospital admission is underway. Would I go to the hospital to be with the family? Would I go to the hospital to represent the concerns of the health care team?
Amelia's Voice
In the hospital, oxygen on, vital signs checked, dinner menu reviewed, nebulizer ordered, IV started, caring staff and loving family present. The small hospital room is abuzz with activity. Everyone seems tense. I wonder what they are thinking.
One by one I ask to speak privately with each of the family members at the hospital and on the phone to those who are out of town. How are you feeling? Tell me about you and Amelia. One by one they cry, they express fear, they express their sense of helplessness. They describe their strength as the family. Their strength is Amelia. She made decisions so easily. She managed life with such energy. She helped them sort through the tough times in their lives. She infused their lives with hope and love. She kept the family together.
"I will not be the one to give up, to let her down, to show her any sign of fear. I will not be the one. I will not be the one. I will not be the one . . . but if the decision is to let go, I will be supportive. I will understand."
I ask, "Amelia, may I speak with you, with your husband beside you and your family nearby?"
"Yes." We elevate the bed a little higher, prop some pillows for comfort and lean in closely to talk and listen.
"How are you feeling? Do you have questions? How can we help you?"
Slowly, one quietly articulated word at a time, Amelia speaks, looking directly at me with her husband's arm resting against her shoulder. And then, " I don't want to live like this."
Slowly, cautiously, we clarify. "This is a hard time, you are just beginning treatment . . ."
"I don't want to live like this," she says to me.
"Can you tell this to your husband?" Her tears come. Amelia turns her head, looks at her husband, and says, "Please, let me go."
The room is transformed with tears and softness. The lights are lowered, the IV discontinued, the respiratory therapist dismissed. A grandchild climbs in bed with Grandma and siblings embrace. It has been three hours since admission.
Amelia was discharged from the hospital the next day with orders for hospice. Family members arrived from out of state and were able to attend gatherings that filled Amelia's room with joyful caring and remembering. She died a month later having shared very special moments and special goodbyes.
As health care providers look to improve the effectiveness of end-of-life care, we are reminded how vital listening, understanding, trust, and relationships are to ensuring better outcomes.
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PeaceHealth Oregon Region is an integrated health care system that includes a 430 bed acute care facility (Sacred Heart Medical Center), a multi-specialty group with more than 100 physicians (PeaceHealth Medical Group), and an array of outpatient and home care programs.