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Discussing End Of Life Issues In The Hispanic Community
While end of life discussions are difficult for everyone, they can be particularly troublesome for underserved populations who face a multitude of cultural and economic barriers within the American health care system. The End of life Issues Personally and Spiritually Explored (ELIPSE) study was developed in response to observations by local, Northern California medical professionals and social service agencies that Latino communities are on the periphery of health care decision making. Although Latinos comprise a third of California's population, roughly, only 4 percent of the state's physicians are Latino and many of them do not speak Spanish. This results in a Latino population to physician ratio of 2,893:1 and represents a large shortfall of physicians available to serve as cultural liaisons for their Latino patients.
To assist in the goal of improving the Latino health care experience in the San Jose community, 66 adults agreed to participate in a series of three focus group sessions that explored their attitudes and concerns regarding End Of Life Care. The objective of the study was to ascertain participants’ views of death and dying, their interactions with the health care system and their concerns about discussing such issues with their families.
Research Results Summarized
- Most of the participants wanted to learn "bad" medical news from a family member rather than from their doctor. Health care professionals should acknowledge this and respect a patient's right not to know. The health care system should be flexible enough to accommodate communication patterns that look different from those of the informed-consent tradition, which insists that doctors and nurses tell a patient everything.
- The lack of Latino physicians is considered a barrier to effective doctor-patient communication in general and especially in end of life situations. Culturally competent health care requires understanding people's blueprint for living, not just an ability to understand a language.
- It is difficult for people to know when enough is enough when it comes to life-sustaining technology or Hospice Care. This may be due to the complexity of technology itself and/or to a reluctance that we all share, not wanting to be the one who makes the final treatment decision for a loved one.
- In the San Jose Latino community, as in the larger American society, death and dying are difficult to talk about even with one's closest family members.
- Most participants shared the belief that they do not fear death as much as the dying process. They believe that we cannot escape death, but we can make it less frightening. By viewing dying as part of life, decisions about it can be made in the same way we make decisions about living—with care and support.
Participants in the study spoke about the difference between "theoretical" cases like those described in the written materials and what happens in real life when emotions are running high and the lines between intervention and nonintervention are not so clear cut. In this aspect, their views were not culturally unique. There is nothing simple or easy about holding a loved one's life in your hands.
Interactions With The Health Care System
Although 55 percent of participants said they felt comfortable talking with their doctor about end of life issues, they complained about the kind and level of communication they have with physicians in general. They look to their doctors for compassion, advice, guidance and treatment, but find that most doctors lack the time, sensitivity and warmth that facilitate open communication. It was clear that people desire a professional and personal relationship with health care providers although they do not always experience it.
One barrier to open communication is the lack of Latino and Spanish-speaking doctors. Many participants said that having doctors who understand both their language and culture would make a big difference in their medical interactions. They described effective communication as more than just accuracy in translation. Good communication involves a deeper understanding of cultural values such as the importance of strong family bonds.
The study substantiates the need within all communities to develop opportunities for conversation and sharing of information about end of life issues prior to the time of need. All too many patients in skilled nursing facilities or hospitals find themselves and their families having to make decisions about treatment or Hospice Care during stressful times.
The ELIPSE project was supported by a grant from Catholic Healthcare West and administered by the Catholic Community Initiative of Santa Clara County.
November 6th 2011
Author: Gloria Ha’o Schneider
‘Til Death Do Us Part
When Shirley MacLaine's character watched her cancer-stricken daughter played by Debra Winger, succumb to the disease’s final stages in the 1983 movie, Terms of Endearments, it perhaps seared an image in our minds that no one should die alone. Surrounded by her family, and just prior to looking at her mother one last time before passing, Winger’s character dutifully spoke to her children telling them she loved them and even if they disagree, she knows they love her as well. Her final words to them were, "I think it went pretty well, don't you?"
Some Hospice programs include organizing a group of volunteers who sit vigil at a patient’s bedside when family members are unable to be present or need to step out, so that no one is alone during their final moments. A recent family departure from a Hospice room to get something to eat was cut short with a last minute decision to return, only to have their loved one pass away just moments after they arrived. It became the consensus of the family that their husband and father had “held on” and waited for them to return.
A blog posting by a Hospice physician earlier this year provided another insight into how many patients feel about the subject. The doctor said, “I've had many private conversations over the years with dying people in which they've shared their fears. Often they're afraid of suffering. They fear for their families' well-being, and sometimes they worry that they've left some piece of interpersonal work undone. But they never tell me they fear dying alone. On the contrary, some have said they were afraid of dying in front of their families. They wanted to spare them the pain of witnessing that final breath.”
While doing research and writing on end of life issues and Hospice Care, it became clear that the goal of Hospice is most importantly its focus on life, even one that is nearing its end. Providing comfort or Palliative Care to improve the quality of one’s life and addressing their concerns is paramount. Experience has shown that pain medication can greatly improve the quality of a dying patient’s life. Pain is frightening; physically debilitating and can become emotionally depressing. It can cause patients to become fearful, without hope, helpless and even angry, with themselves, others and for some, their God. Pain management through medication is usually a key ingredient of Hospice care, although a few patients refuse pain medication for a variety of reasons. In these cases, comfort care including things such as touch, music or the mere presence of a caring Hospice volunteer or family member can provide some relief.
Although many terminal patients may not want be alone when they take their final breath, others may prefer it. Gradual withdrawal from people and surroundings is common among the terminally ill and many patients may feel embarrassed by their dependence on others or by their appearance. Autonomy or the respect for honoring a patient’s wishes is another prime objective of Hospice Care. In a poignant observation on the physician’s blog post, it was pondered that maybe, “the dying do not fear dying alone, perhaps on some level they embrace it.” “And so,” it was said, “that perhaps we ought not to say that no one should die alone, but that no one should have to, because of circumstance or fate.”
October 9th 2011
Author: Gloria Ha’o Schneider
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