Chaplain Linda F. Piotrowski on setting the palliative care record straight

"This Means I'm Dying"

“Palliative care as it is practiced at DHMC is all about quality of life. We’re asked to see people living with serious, usually life-threatening illnesses, and our job is to assist them and their families to live as fully as possible. This includes focusing not only on their physical comfort, but also their emotional, social, and spiritual well-being, as well as that of their families.”
Ira Byock, MD [1]

Paula Caron, ARNP, nurse practitioner, and I, a board certified chaplain, knocked on the door and entered the clinic room:

“Good morning, Mr. Haney (pseudonym), is this a good time for us to visit?”
“I guess so,” was his wary reply.
We introduced ourselves, identifying our places on the palliative care team.
He responded, “Oh no! I’m afraid of you two. They told me you’d be coming. Now here you are and I’m scared!”
Paula and I looked at one another with surprise and proceeded to ask Mr. Haney if, now that he had seen us, we were still frightening
“You’re from palliative care, aren’t you?”
We replied in the affirmative.
“You’re darn right I’m still scared. This is it! It means I’m dying! Okay, let me have it!”
We laughed, recognizing that a sense of fellowship had already begun to build.
“We’re here to help you to live as fully and as freely as you can for as long as you can!”

Mr. Haney was fifty-four. He had recently been diagnosed with cancer. We hastened to assure him that we weren’t there because he was dying. We explained that we were there to get to know him and his wife so we could explore with them ways we might be helpful as they faced the consequences of his advancing illness. He began to relax and we engaged in the work of getting to know Mr. Haney and his wife.

As a palliative care practitioner I am concerned about responses like Mr. Haney’s. While not all patients share their fears as openly as Mr. Haney, many hear palliative care and immediately think it means they are dying and that we are here to talk them into giving up.

For years, palliative care services have quietly gone about their work. Listening to patients and caregivers, controlling pain, tending to psycho/social/spiritual needs, and becoming integrated into patient care within outpatient and inpatient centers are enabling patients and family members to feel heard and respected.

The values, principles, and core practices of palliative care have earned recognition. Attending to the patient and the family – as a single unit of care, partnering with other healthcare professionals, using an interdisciplinary team approach, managing symptoms, assisting with ethical/shared decision-making, coordinating and insuring continuity of care, and spiritual assessment with spiritual well-being as a goal of care all have served to afford palliative care services a respected place on the medical team.

Palliative care programs vary from setting to setting. Many programs are not made up of full interdisciplinary teams. Some focus solely on end-of-life care. Others may concentrate exclusively on physical symptoms, while others may include just inpatients.

Dartmouth Hitchcock Medical Center’s interdisciplinary palliative care service is modeled after full hospice teams. It is comprised of certified specialist palliative medicine physicians, palliative-care-certified nurse practitioners, a board-certified chaplain, a clinical social worker, a volunteer manager, a healing arts practitioner (massage and Reiki), as well as specially trained “No One Alone” volunteers and office support staff. We respond to referrals in both the outpatient and inpatient setting. We are consulted in the outpatient clinics early on after a patient’s diagnosis. This enables us to guarantee continuity of care if and when a patient finds him or herself in the inpatient setting. To meet the needs of inpatients and outpatients our services are available twenty-four hours a day.

In addition to meticulous, individualized medical assessments, our services also include assessments on spirituality, quality of life, and bereavement and risk assessments. The services we provide are driven by these assessments. Bereavement support is given to families as it becomes necessary. As part of our services we assist families in making the transition to hospice services when appropriate.

Our team is involved in research projects, as well as ongoing educational efforts. We partner with local community resources to improve quality-of-life and end-of-life services throughout our region. We advocate for excellence in palliative and end-of-life care in all healthcare settings.

Mr. Haney quickly overcame his fear of me, Paula, and our other team members. Over the past 14 months we have developed a partnership of caring. As the spiritual care provider on our team I have had the privilege of accompanying Mr. Haney or “Red,” as he prefers to be called, his wife, and family on this part of their life journey. We’ve cried, laughed, been scared, and rejoiced together. We’ve worked on issues of reconciliation. At times we’ve complained bitterly to God. At other times we’ve praised and thanked God. Along the way we’ve become partners in healing.

I hope that the next time you hear palliative care described as just a precursor to hospice, or a service for the dying, you will take a few moments to set the record straight. Perhaps this quote from the precepts for palliative care from the Robert Wood Johnson Foundation will be of assistance as well:

“Palliative care refers to the comprehensive management of the physical, psychological, social, spiritual and existential needs of patients, in particular those with incurable, progressive illnesses. Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and family. The goal of palliative care is to achieve the best possible quality of life through relief of suffering, control of symptoms and restoration of functional capacity while remaining sensitive to the personal, cultural and religious values, beliefs and practices.”[2]

The following is a prayer I’ve written in celebration of patients, family members, staff, and colleagues. May it be for you, the reader, a blessing.

In times of uncertainty and fear
We reach out with trembling hands.
Walls of pain and mistrust crumble.

Healing touches come from strangers.
Hearts open,
linking us in a litany of caring.

Standing together before the power of death
we learn to trust.
We become strong.
We find God.

Give us eyes to see, we pray.
Amen.

References:

[1] Director of Palliative Medicine, Associate Director for Cancer Survivorship and Palliative Care at the Norris Cotton Cancer Center and Dartmouth Hitchcock Medical Center, Lebanon, New Hampshire.

[2] Last Acts Task Force, Robert Wood Johnson Foundation: Precepts of Palliative Care, Princeton, NJ: December 1997.

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