Speaker brings Catholic perspective to palliative care

By Becky Aubut
Anchor Staff
beckyaubut@anchornews.org

MASHPEE, Mass. — Many people confuse Hospice and palliative care, thinking they are one and the same. Although they share a similar philosophy, the delivery of care is different. Hospice and palliative care focus on quality of life or “comfort care,” including the active management of pain and other symptoms, as well as the psychological, social and Spiritual issues often experienced at the end of life.

Hospice focuses on relieving symptoms and supporting patients with a life expectancy of months not years, and their families. However, palliative care may be given at any time during a patient’s illness, from diagnosis on even if not mortally ill.

This was the message MC Sullivan, R.N., M.T.S., J.D., director of the newly-established Initiative on Palliative Care and Advanced Care Planning for the Archdiocese of Boston, focused on during her presentation at Christ the King Parish in Mashpee.

The Center to Advance Palliative Care defines palliative care, also known as palliative medicine, as a specialized care for people living with a serious illness. It focuses on providing relief from symptoms and stress of a serious illness, whatever the diagnosis. The goal is to improve quality of life for the family and patient.

The keyword is “living” with a serious illness, not necessarily “dying” from a serious illness. 

In any definition of palliative care, you won’t hear words like “death,” “end-of-life,” or “Hospice,” because palliative care is not those things, said Sullivan: “If I could make a bumper sticker, it would say, ‘All Hospice care is palliative care, but not all palliative care is Hospice care.’” 

More people are accustomed to hearing the phrase “Hospice care” than the phrase “palliative care” and are unsure of the difference. Many times healthcare professionals see those terms as synonymous, “and I can assure you, they are not,” said Sullivan. 

Palliative care is introduced at the moment of the diagnosis of a serious, chronic, life-limiting illness. Using the catchphrase, “at any age, at any stage,” Sullivan explained that at any age of a patient, at any stage of an illness, once a serious, life-limiting illness is diagnosed, palliative care ought to be invoked or offered so a team can meet the patient and family right away, have a care plan created and adjusted accordingly as the disease progresses and/or circumstances change.

“It should be a flexible, dynamic thing that travels with the patient over the course of the disease,” said Sullivan. “If it starts early enough, generally you don’t see much of your palliative care team because you’ve just had the diagnosis, you’re probably living pretty well. As time goes on, and as the disease progresses, you may see more of them — you may see more of the chaplain at one time, and the social worker another time; more of the physician at one time, or the nurse at another time. It’s flexible and dynamic, and it completely depends on the needs of a patient and family at any given moment.”

Palliative care implements a holistic interdisciplinary care plan that identifies, assesses, and addresses the comprehensive needs of the seriously ill patient, including pain and other symptom management, psychosocial issues, emotional support and Spiritual care from a team of specialists from all backgrounds — nursing, psychiatry, social work, chaplaincy, and so on — who work together on behalf of the patient.

“This thing that is so impressive about palliative care is that it is a method of treatment that implements a plan that is both constructed by and carried out by an interdisciplinary team of healthcare professionals,” said Sullivan. 

Any age, any stage, a diagnosis can be made, and the disease may not just be life-limiting in the sense of time, but also limiting in the sense of function. So a child of seven who has just been diagnosed with juvenile diabetes is a perfect candidate for palliative care, explained Sullivan. The limitations on his or her function will be determined by the vulnerability that children experience with diabetes, the teen-age years as the hormones kick in, and as the disease more or less stabilizes in adulthood.

“Along the way, there are implications for their kidneys, their heart, their lungs, for their circulation,” said Sullivan, reiterating: “At any age, at any stage, palliative care is appropriate.”

The Initiative for Palliative Care and Advance Care Planning is a recently-established program of the Archdiocese of Boston (www.BostonCatholic.org/PalliativeCare). Its goal is to provide education, outreach and advocacy that will create an informed public about palliative care, a multidisciplinary approach to the care of the seriously ill which is patient-centered and family-oriented. The program also supports, promotes and provides education about Advance Care Planning, which allows people to discuss and make known their wishes for care in anticipation of a time when they cannot speak for themselves. Most importantly, the Advance Care Planning component of the initiative provides information about how to designate a health care proxy or surrogate decision maker who will be their voice when they can no longer make or articulate their health care decisions.

The new initiative was the brainchild of Cardinal Sean O’Malley, OFM, Cap., who, when bishop of Fall River, acquainted himself with and committed himself to palliative care, a new sub-specialty in medicine.

“He was really one of the early adopters,” said Sullivan, “and he has remained committed to it ever since.”

Why have an initiative for palliative care? 

Palliative care is a “good,” said Sullivan. “It lifts out, considers, assesses the needs for every aspect of what makes us human because when we talk about palliative care, we’re considering the physical symptoms that people with serious illness suffer; we are talking about the physiological impact and the psychosocial impact on relationships, on family, on finances; we understand people are on an emotional roller coaster as they deal with serious illness; and most importantly, in the Catholic community, we understand there are many times when the most important thing we can offer people with serious illness is Spiritual care.”

When a patient is diagnosed, often they focus solely on the diagnosis, with a “why me?” attitude, feeling as if they have done something wrong; a patient will “feel abandoned” and that a “normal life” is no longer possible. Palliative nursing and medicine can appreciate an emphasis on Spiritual care.

“That’s important because it’s one of the reasons that makes palliative care so attractive to us and so attractive to the Church,” said Sullivan. 

She added, “The interesting thing is, for those of us who have worked in palliative care, and particularly those of us who are people of faith who work in palliative care, we understand the incredible need for an importance of Spiritual in the care of people with serious illness. It is sometimes the last thing that the patients themselves realize they need. Sometimes they know right up front, other times they don’t.”

In context of palliative care, the focus is on the patient but care is also family-oriented “in whatever way we define family,” said Sullivan.

She added that palliative care is wonderful for the patient, and incredibly helpful and supportive for the network of caregivers surrounding the patient, making it a benefit to the community and the Church recognizes these benefits.

“Pope Benedict was particularly eloquent, I thought,” said Sullivan. “The Church wishes to support the incurably and terminally ill by calling for just social policies. Pope Benedict calls on just social policies which can help eliminate the causes of many diseases and urging improved care for the dying and those for whom no medical remedy is available, there is a need to promote policies which create conditions where human beings can bear even incurable illnesses and death in a dignified manner. Here it is necessary to stress once again the need for more palliative care centers, which provide integral care offering the sick the human assistance and Spiritual accompaniment they need. This is a right belonging to every human being, which we must all be committed to defend.”

St. John Paul II and Pope Francis are also supporters of palliative care, and Sullivan stated that if she could add anything to the words of Pope Benedict, she said it would be the word, “promote.” Palliative care looks at the whole picture, at relationships, friends, and family. The reluctance to accept palliative care is the result of misunderstanding what palliative care is, and how it benefits those with an illness. 

“That seems to be a sticking point in our faith community,” said Sullivan, “that somehow it not only is not life-saving, but that it might be death-hastening. I can assure you there is nothing farther from the truth.”

Palliative care values the person and along with the ringing endorsements from past and present popes, another reason to have a palliative care initiative as a work of the Church is “that it is truly one of the few things that can, almost point-by-point, refute the tsunami of support for physician-assisted suicide that we are facing in our country,” said Sullivan.

Five states recognize legal physician-assisted suicide, and with every campaign, people become desensitized to it. There is no moral outrage. Each personal story shared plays on emotions; stories are so heart-wrenching and told in such sympathetic ways, there would be something wrong with us if we didn’t feel compassionate, said Sullivan.

“Feeling sympathetic for them does not mean we need to espouse their cause,” said Sullivan. “Proponents [for PAS] count on us to do what happened with abortion; [for us to say], I might be personally against it but I think it needs to be available for people. We can’t go there.”

Each proponent of PAS plays up the loss of dignity, independence, and unmitigated pain, but on a policy level, palliative care refutes all of those arguments. Dignity is there from the beginning because the patient drives the care plan, with the emphasis on the patient’s needs. There is no guarantee that no one will suffer pain, but advancements in the pharmaceutical field have been huge. 

“We do know that pain is exaggerated and exacerbated by other kinds of suffering, by anxiety, by feelings of loneliness, by depression,” said Sullivan. “All of that is handled and taken care of in a palliative care program.”

It’s OK to rely on others, especially if it’s done in a dignified and respectful way; “It’s not so bad. I may need help to walk or bathe, but I’m still the one in charge,” said Sullivan. “That is hardly dependence.”

The USCCB offers a booklet with directives that reflect Church teaching that pertain to healthcare entitled, “The Ethical and Religious Directives for Healthcare Services.” 

The USCCB has recast the challenge to PAS, said Sullivan, in that PAS is a threat to good palliative care, and it catches proponents of PAS off guard: “And that’s what we need to start doing,” said Sullivan.

To view Sullivan’s presentation in its entirety, including a question and answer section by attendants, go to www.ChristTheKingParish.com/video-gallery.


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