DUMAGUETE CITY—For any family, it is devastating to hear doctors say there is nothing more they can do for the patient.
But with palliative care, patients and their families can face the prospect of death more courageously. It offers well-thought-out “goals of care” that ease suffering and give the patient the opportunity to die with dignity and in comfort.
“We are trying to change the way people face death and dying, which is a natural part of living,” said Dr. Roger Strong, a nurse practitioner at San Diego Hospice and the Institute of Palliative Medicine in California.
“We believe no one should die in pain. We believe no one should die feeling alone. Our job is to help a person ‘live until he dies.’”
Strong recently served as chief facilitator in a train-the-trainer course of a project called End-of-Life Nursing Education Consortium (Elnec) in Dumaguete City, Negros Oriental.
About 90 registered nurses, nursing faculty, medical doctors, and chaplains from Negros Oriental took the course.
The Elnec curriculum mainly taught the participants here that the family is the unit of care; culture is an important influence at the end of life; end-of-life care is not confined to cancer or AIDS patients, but essential across all life-threatening illnesses and cases of sudden death; and that to get quality care at the end of life, care has to be interdisciplinary.
Denying death
“People usually deny death, believing that medical science can cure any patient. Death often is seen as a failure of the health care system, rather than a natural aspect of life. This belief affects all health professionals, including the highly trained nurses. That is why they need specialized knowledge and skills to be able to provide quality palliative care to patients,” Strong said.
The Elnec course was presented here by the Philippine Cancer Society, Philippine Society of Hospice & Palliative Medicine, City of Hope, American Association of Colleges of Nursing (AACN), Philippine Airlines, and Silliman Medical Center Foundation Inc.
In the United States, Elnec is administered by the AACN in Washington and City of Hope, a cancer center in Los Angeles.
The same two-day course was conducted on Oct. 18 at Philippine General Hospital, and on Oct. 29 at Xavier University in Cagayan de Oro City.
It consisted of eight modules on palliative care, pain management, symptom management, ethical issues, cultural and spiritual considerations, active communication; loss, grief and bereavement, and the final hours and death vigil.
Easing suffering
Palliative care is the prevention and relief of suffering provided by an interdisciplinary team.
“It may begin when the patient is first diagnosed with whatever kind of disease or prognosis: from the curative treatments, to the palliative care where comfort/supportive treatments are given, to the time the patient is provided hospice care, and up to providing bereavement support for the family,” said Prudence Gaspar, a social worker also at San Diego Hospice, the largest facility program in the United States that is integrated with education and research components.
Gaspar cited US studies that have shown how early palliative care provided to patients with metastatic lung cancer led to significant improvements in both quality of life and mood. “As compared with patients receiving standard care, they had less aggressive care at the end of life, and survived longer,” Gaspar said.
Symptom management
Unlike hospice care, which is given during a patient’s last six months (and in the Philippines, often refers to a home for the terminally ill and run by some religious order), palliative care focuses on symptom management regardless of capacity to cure the disease, relieving pain, and improving the patient’s quality of life. It does not necessarily mean end-of-life care.
In palliative care, the support continues even after the death of the patient.
Strong said one difficult task was how to explain to children why their parent who was taken to hospital alive was brought out dead. “How do you communicate that?” he said.
The palliative care team is usually composed of experts who provide the medical needs (physician, nurse, pharmacist, physical or occupational therapist), emotional needs (social worker, aide, homemaker, trained volunteers, grief counselors), and spiritual needs (chaplain) of the patient.
One of the active palliative care specialists in the country is pain management expert Dr. Rachael Marie Rosario, executive director of the Philippine Cancer Society and consultant at the University of the Philippines-Philippine General Hospital (UP-PGH).
Life cycle
“I have embraced the fact that in life, there’s a beginning and an end. There’s birth and death, and that everyone must complete that cycle,” Rosario said.
“I only get sad when the death is initially not acceptable, like when the patient is too young, or was at the peak of his career, or had figured in a tragic accident, when no preparations were made,” she said.
It’s entirely different for people who have been prepared, or for patients who are satisfied, or have accepted their purpose in life, she said.
“Even when there’s no more hope for cure for a certain disease, it’s not true that there’s nothing more we can do,” Rosario said.
When the surgery or chemotherapy option has been exhausted and the disease is still active, she added, she would rather say, “We just need to refocus on the patient’s comfort.”
In the United States, half of those who are sick die in hospital, 40 percent of them in intensive care.
“But if you ask them, majority prefer to die in the comfort of their home,” Gaspar said.
In the United States, she said, people can fill out the Advance Health Care Directive, the Five Wishes, or the Physician Orders for Life-Sustaining Training forms, which are not part of the Philippine health care system. “At least not yet,” she added.
Living will
The Five Wishes form is a living will in which patients are asked to specify the people who can make decisions for them when they can no longer decide for themselves; the kind of medical treatment they want or don’t want; how comfortable they want to be; how they want people to treat them; what they want their loved ones to know.
Gaspar observed that in Philippine hospitals, the patients’ families simply write their decision on resuscitation on the medical chart.
Gaspar stressed the need for all people to understand palliative care, to plan while they are not sick and their minds are clear, and to discuss with family members how they want to be cared for.
“Otherwise, when the crisis happens, the family is left with doubts and guilt feelings,” she said.
Forms similar to Five Wishes are being designed with lawyers at the PGH and at the Silliman Medical Center. “The doctors would welcome this development because they are protected from lawsuits,” Gaspar said.
Palliative care bill
A bill has been introduced in Congress to improve the quality of life of the terminally ill while minimizing the financial burden of their families.
House Bill No. 5250, the proposed Palliative and Hospice Care Act, introduced by Rep. Linabelle Ruth Villarica of Bulacan, is on second reading in the House of Representatives.
The passage of the bill would decongest government hospitals and stop the draining of public hospital resources intended for indigent patients. It would also encourage the development of home-based palliative and hospice care programs at the grassroots level, which would increase the poor’s access to quality health service.
“That is something we look forward to, as we plan to set up a holistic home health care program by next year,” said Roberto D. Montebon, president of SU Medical Center that hosted the training course.
Montebon said a palliative care law would be ideal for the Philippines because culturally, Filipinos prefer to care for ailing family members or entrust the care to caregivers they know.
Roles redefined
Rosario agreed that palliative medicine had redefined the roles and goals of medical practitioners. “It takes a certain kind of dedication and a certain degree of altruism to encompass the totality of being a palliative care specialist,” she said.
“It’s time consuming but in the end, it’s more satisfying,” she said. “Our role as physicians has expanded to include giving even emotional or spiritual counsel. We don’t just make a connection with the patient anymore, we now treat him holistically. I may not be able to cure the patient, but maybe I can help heal him—erase regrets in life, come to terms with other people, make peace with God.”