Filipino Americans "In Denial" On Palliative Care Benefits

Filipino Americans "In Denial" On Palliative Care Benefits

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Photo: Stanford’s V.J. Periyakoil, MD, discussed the benefits of palliative care for very ill and dying patients and their families. (Mico Letargo, Asian Journal)

Part 1. Read Part 2 here.

LOS ANGELES – In the United States, health care for elders has always been and will always be an important topic.

Whether it is discussed within the context of the federal and state governments, or if it is talked about at the community or domestic levels, health care for older people is a paramount topic — especially among communities of color.

Diverse Attitudes

In spite of their seemingly innate urge to care for elders, communities of color have very diverse attitudes about dealing with their ailing elderly, and about end-of-life situations.

In a study about Californians’ attitudes and experiences on death and dying, the California Healthcare Foundation found that only 31 percent of Hispanics; 33 percent of Asians; 41 percent of African Americans and 51 percent of Caucasians talk about end-of-life wishes.

Filipino American Service Group Inc. (FASGI) Executive Director Susan Dilkes observed that in her organization’s work, only a low number of Filipinos talk about end-of-life care plans with their elders.

This could be linked to their customs and cultural upbringing, Dilkes said. She explained that for Filipinos, it uncomfortable to talk about end-of-life, palliative care, and hospice care because they highly value the act of providing first-hand personal care for their elders.

To address this phenomenon, FASGI offers Home Health Care seminars to educate family members on the proper practices and methods of caring for their sick loved ones at home.

Death is never an easy topic for any group, of course. Virginia Jackson, chief chaplain of the Palliative Care Clinic at VA Palo Alto Medical Center, said that among African American families, there are those who have strong relationships with one another and find it difficult to talk about their end-of-life plans.

“Some just don't want to talk about the inevitable,” Jackson said in a professional article she wrote on African American culture and care. “The fact that it stirs up history and pain too much for them to bear perpetuates unpreparedness to handle end-of-life matters,” she added.

Jackson cited a 2012 study on African American seniors' perspectives on advanced care planning. The data reveals that discussing advanced care stirs issues such as trust, fear, relationships, lack of information or knowledge, procrastination, cultural uprooting, deterioration of family or community, past discrimination experience, and religion.

Barriers to Advance Planning

One theme that arises in the discussion of advance-care planning at the end of life is the lack of information.

Aurora Cudal, a prominent Filipino-American journalist and health care educator, has personally experienced a family member undergoing palliative and hospice care. Cudal, who turned 80 in July, said very few Filipino patients are enrolled such programs because most Filipino family members “really don't know the process involved” in palliative and hospice care.

“They prefer to take care of their loved ones [on their own], than to give them to someone whom they don't know,” Cudal said of Filipinos' mindset about palliative care and hospice.

But palliative care usually can bring comfort and reassurance to patients and their families. Palliative care—which includes hospice for terminally ill patients, but is broader--deals with managing the pain and symptoms that arise from serious or terminal illness. It also includes communication and social work with the patient and the family to ease any psychological or spiritual distress that they may encounter throughout the process.

According to V.J. Periyakoil, MD, director of the Stanford Palliative Care Education and Training Program, [] palliative medicine is also relevant to patients who are not necessarily dying, such as very ill patients who are diagnosed with cancer or heart disease, but who may still have years of life ahead of them.

Periyakoil said that the science of palliative medicine “applies across the board,” starting when the patient has any kind of pain and severe non-pain symptoms, such as persistent nausea.

Meanwhile, hospice care is a subsection of palliative medicine where in-facility or in-home care is given to patients with terminal illness at the last six months or less, often under Medicare.

“The objective of hospice is comfort care,” explained Josie Jones of Admiral Hospice Care Inc., “Providing quality-of-life on the remaining time of [the patient's] life.”

Less Family Burden

FASGI’s Dilkes believes Filipino families should seriously consider palliative care enrollment for their ailing elders for two major reasons:

First, the program would greatly reduce the burden on the family because they can continue with their daily lives with the knowledge that their loved ones are in the care of trained professionals.

Second, in the hands of those professionals, family members are usually assured that their elders receive the most appropriate and best care possible for their pain relief and symptom management.

According to Jones, the number of Filipino patients enrolled in hospice hasn't reached a number that can be considered “decent.” She said that many are unprepared, unfamiliar with the services or simply “just in denial.”

“There is a need for nationwide awareness and education about end-of-life care,” Jones said.

With Filipinos being a financially sensitive people, money is sometimes brought up as another possible impediment against enrollment to hospice care. Jones said that financial constraints or costs should not be an issue because hospice can be covered by Medicare, Medicaid (called Medi-Cal in California) and other insurance coverage plans for those with low incomes.

“We've seen all patients who have lived a quality life on their last years, months or days because of comfort, respect and living life in the comfort of their own home,” Jones said, “They all said, 'I wish I'd have been in hospice sooner because of [the comfort] of being pain free.’”

Mico Letargo wrote this article for Asian Journal through a California Healthcare Foundation Journalism Fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program.