In 2009, Mexico passed a commendable set of laws guaranteeing all patients the right to specialist end-of-life or palliative care.
In practice, the legislation has proved to be hollow as this mutli-disciplinary terminal care treatment is rarely delivered in a timely or appropriate form, if at all, say those working in this developing field for Mexico.
For Dr. Susana Lua Nava, a nun who runs the non-profit Juntos Contra el Dolor, a four-year-old palliative care hospital/clinic in Guadalajara, the problem lies mostly with an indifferent medical profession.
“We still need the medical body to accept palliative care as a specialty,” she says. “Doctors can’t do everything on their own. Oncologists usually don’t inform the families of those with terminal cancer that they can have access to services that address their emotional, social and spiritual concerns, as well as physical ones. They don’t tell them of the options to dignify their final days.”
Palliative care in its modern context has its roots in the groundbreaking work undertaken by Cicely Saunders, who opened the world’s first purpose-built hospice in London, England in 1967. The first hospice in the United States opened in Branford, Connecticut, in 1973.
While still in its infancy in Mexico – “we’re about 50 years behind the rest of the developed world,” notes Lua – palliative care has become an integral part of many countries’ health programs. Around 80 percent of hospitals in the United States with more than 300 beds now have their own palliative care units.
The World Health Organization defines palliative care as “an approach that improves quality of life for patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of problems, including physical, psychosocial and spiritual.”
With this philosophy in mind, Lua and Juntos Contra el Dolor provide support for families who find they have nowhere to turn when a loved one’s deteriorating terminal condition is accompanied by increased emotional and psychological suffering.
“Most people don’t have a fear of death, they fear of the process of dying,” Lua says. “Experience in Europe and elsewhere shows us that when families can rely on support throughout the end-of-life process, their pain is reduced significantly.”
After taking her vows and later graduating from the medical school at the Universidad Autonoma de Guadalajara, Lua spent a year in the Canary Islands at the Hospital Dr. Negrin de Las Palmas, renowned for its breakthrough work in palliative care.
“I was overwhelmed at the kind of care that was being given there,” she says. “The doctors made the patients feel more human, less intitucionalized. It motivated me tremendously and I thought this could also be done in Mexico.”
Although their housing and some other expenses are provided by the local Catholic archdiocese, staff at Juntos Contra el Dolor are at pains to point out that it receives persons of all religions, races and diverse socio-economic backgrounds at its eight-bed facility for care, counseling, or to arrange in-home services. The labor is carefully overseen by Lua, who does not earn a salary and heads a dedicated team of nurses, social workers, psychologists and spiritual advisors.
The no-frills rooms provide bedding for family members, and patients are welcome for as long as they want, with many deciding to stay until the last moment of their lives, accompanied by their loved ones.
“Ideally, the home is the most dignified place to die.” says Lua. “But sometimes in those final, most difficult days, families enter into an emotional crisis. They become burned out, so we can bring them here for the last moments.”
Lua says many patients and their families who arrive at Juntos Contra el Dolor don’t have the safety net of medical insurance. “They are often exhausted after having been shifted around expensive doctors and trying out different treatments. And quite often it’s not the patient who needs a psychologist or social worker but the family.”
Making hospices succeed as “for-profit” models is a difficult task in a country where so many people live on the breadline, Lua acknowledges, which is why she believes politicians should allocate more resources to palliative care and its development. “We need to get people more informed so they can put pressure on governments to open or fund these kinds of spaces.”
Lua recognizes that a few Mexican health institutions now run rudimentary palliative care programs, but says they do not offer beds, areas for families or specialized personnel to carry out home visits.
In an effort to raise funds for Juntos and disseminate knowledge of palliative care among professionals and the public at large, Lua hosts regular educational activities and organizes an annual Palliative Care Congress, the second edition of which took place at Expo Guadalajara at the end of October.
Among the speakers was Dr. Marcos Gomez Sancho, one of the most highly regarded international specialists in the palliative care field. He delivered papers on the “Culture of Death in the Latin World” and “Dying in Peace,” and gave advice for family caregivers in terminal situations. Other compelling lectures included anesthesiologist Dr. Beatriz Angelica Flores Garcia’s topic “Morphine versus Marijuana,” while Maria de Jesus Gonzalez Romo spoke of home nursing care and a not unusual circumstance: attending to men who have two families, two “wives” and two sets of children all meeting at a man’s death bed. Lua offered her own account about suffering and pain as an opportunity for spiritual growth after experiencing three invasive surgeries, one to correct a surgery gone wrong, earlier this year.
Lua – a business-like and articulate caregiver – explains that providing end-of-life support and expanding the public’s awareness of how best to treat the dying is a vocation and not simply a by-product of her quarter-century commitment to her religious beliefs.
“Demand in the public institutions is so great that the human touch is getting lost. A doctor who has consultations with 30 patients every morning doesn’t have time to address a person’s emotional needs.
“The work of a palliative care specialist is very different, mostly in terms of the human warmth that is provided for patients and their families. You have to be professional but have lots of empathy.”
Juntos Contra el Dolor always welcomes funds for cleaning supplies, diapers, kitchen items, linens, gasoline for in-home visits, nursing staff, nursing supplies, and upgraded office equipment are always needed. It is registered as an international non-profit and all donations are tax deductible by deposit to its bank account at ScotiaBank CTA 01002517167. More information is available at (33) 3617-2417, www.juntoscontraeldolor.com.mx or This email address is being protected from spambots. You need JavaScript enabled to view it.This email address is being protected from spambots. You need JavaScript enabled to view it..">.