Wednesday, January 14, 2015

Choosing life: a story of the value of palliative care

by Leanne M. Yanni, MD

Minooka pasture 2008

It’s a name. It comes across in our Electronic Health Record as a consult is placed to the Palliative Care Team. Mary Tulane; age 67; ovarian cancer. I call her hospital doctor and ask, “How can our team be of support?” He replies, “She is refusing tests and her family is asking a lot of questions about her disease. They seem anxious and confused.” This is often how a consultation begins; a consultation that most often turns into a relationship.

A Palliative Care Team is a team of individuals with specialized training in serious illness.

As the doctor on the team, I assess how patients are feeling physically as well as how they are functioning which tells me a lot about the future trajectory of their illness. I then translate this medical information into an understandable framework that is used by patients and families to make important, often life-impacting decisions.  Understanding the emotional and spiritual response to serious illness (for example, fear, anxiety, spiritual tension, caregiver stress, and cues for complicated grief after a loved one’s death) requires the expertise of social workers and chaplains who are just as essential to the Palliative Care Team as doctors and nurses.

Melissa, a palliative care social worker, and I review Mary’s chart together. We immediate recognize the unfortunate yet common scenario that prompted the consult. The patient’s illness is worsening. She is being offered more treatment but her last treatment made her so sick. She is tired of being in the hospital. Her family, trying their best to care for her, is overwhelmed.

Prior to our meeting, Melissa visits Mary in her room to introduce herself and our service. A time is set to meet with Mary along with her husband Jeff and daughter Angie. The nurse caring for Mary sets up chairs for us to sit comfortably by her bedside. I introduce myself and Mary introduces Jeff and Angie. As I shake hands with them, I notice her husband’s downcast gaze and her daughter’s tearful eyes that seem be asking for help.

As Melissa and I quietly take our seats, I realize that the most important role I have is to set up a safe space for this conversation. “Mary, we are here today to listen to your story. This will help your health care team understand how best to support you. Would it be alright if I asked you some questions?” Mary calmly agrees.

I begin with inquiries about her upbringing, her schooling, and her work and family life. Tension in the room eases as Mary begins speaking of growing up on a farm, where she has ridden and raised horses since she was a child. They still own several horses that she rides in the pastures of her rural home. As she shares this with us, she turns her head and gazes out the hospital window. Softly she says, “When I was 15, my mother was very sick. We didn’t know what was wrong. My dad took her to the hospital and she never came home.”

Ill at ease, her husband interrupts the moment to explain that they had recently retired. They were on a road trip and Mary began to feel ill. They thought it was just a stomach bug, but over several days her stomach became painfully bloated. They were shocked at the emergency room test results; she had a large mass in her pelvis and had accumulated fluid in her abdomen. From that point on, he states, it has been a roller coaster of medical tests and treatments followed only by news they didn’t want to hear. Jeff states, “Mary has lost her strength; she was able to walk down the road just a few months ago and now can barely walk around the house.”

At this point, Mary sighs heavily and says, “I’m so tired.”

There is silence. With the gentle cue of Melissa’s hand on my shoulder, I wait.

Then I ask, “Mary, what have your doctors told you about your illness?” She pauses, then finding strength states, “It’s cancer that started in the ovary. It spread before I knew it was even there. At first, they said that treatment would help me live a long time. Even with all the treatment I’ve had, though, the cancer is growing.” Her husband adds emphatically, “But there is more we can do, Mary. The doctor said there are drugs your body hasn’t seen yet and even a doctor in New York who can help us.” “New York?” she responds, “That is so far away.”

I sense the discord between them. Mary has suffered through treatment that has prolonged her life to this point, but it’s been difficult to endure. Her husband has lost control to a cancer that is seemingly now in charge; he is responding with a fighting urgency. While Mary sees more treatment as a burden, Jeff sees it as “choosing to live.” As is often the case, choosing to continue medical treatment becomes an artificial representation of choosing life over death.

I ask Mary, “What is most important to you right now?” Mary states that she wants to be at home. During the day, she wants look out into the pasture and at night, she says wistfully, “I just want to sleep in my own bed.”

I ask Mary what she thinks about more treatment for her cancer. “Even if it gave me another month, if that month were in the hospital,” she says, “I would say no.” Jeff is looking at Mary as she says this in a clear, strong voice. She is talking to me but she is really talking to her husband, telling him what she couldn’t say directly - what she felt he wasn’t ready to hear.

Mary’s daughter Angie now speaks up: “Mom, if you want to be at home, we can do that. We can support you and care for you, whatever is needed.” Jeff reaches for Mary’s hand with both of his and bows his head. He searches for the strength he needs to take this step.

In a very short time, Mary has been able to express what is important to her, how she feels about her illness and, most importantly, her family has heard her. Really, this was their conversation.

Melissa and I help them through the process of understanding next steps. It takes several days to bring her symptoms of pain and nausea under control. Mary also has unresolved spiritual tension surrounding her mother’s death for which we engage a palliative care chaplain. After addressing these needs, Mary is discharged from the hospital to her home ready to live, even as she is dying.

Several months later, Jeff calls the office and asks to speak with me. He says, “Mary is dying now, it may only be a few days. With her bed near the window, she can see the pasture from where she lies. Since we left the hospital, she kept saying how happy she was to be home. She would say it over and over again. I just wanted to thank you.” His words echo deeply, I feel them, and then they fade.

I hang up the phone and see a new consult come across our Electronic Health Record. Edward Hobbs; age 82; Congestive Heart Failure. I call his hospital doctor and ask, “How can our team be of support?”

Dr. Yanni is Medical Director of Palliative Medicine at Bon Secours Virginia.


4 comments:

Gloria Lewis said...

Thank you for sharing this beautiful story. It makes me miss my palliative care nursing. I was one of the palliative care nurses at Kaiser Antioch Medical Center for several years. Your caring and compassionate approach reminded me of the Diablo Service Area Palliative Care Team. Having difficult compassionate conversations is not easy in our high-tech, death avoidance society. I hope your continue to share your expertise and wisdom in palliative care. Gloria Lewis, EdD, MSN, MHA, RN, CCM.

Lynn Ryan said...

Thank you Dr Yanni! It is always a truely humbling experience to be invited into someone's Life and Home during a most intimate time indeed.
Lynn Ryan, VCU Palliative Care Clinics

On Q Health said...

Beautiful story!

Anonymous said...

I like this and it truly exemplifies what the palliative and hospice care is all about. Honoring the end-of-life wishes of the individual that is dying.