Inspired by successful palliative care experiences in the U.S., and determined to find new ingredients that would allow the approach to succeed where previous attempts have failed, Miriam Israel is creating a culture of end-of-life care in Mexico. She has developed a set of integrated services to help patients and their families cope with the emotional, psychological, physical, and legal or socioeconomic consequences of death. Miriam is beginning to spread her approach through the budding National Palliative Care Network, with members in 24 Mexican states.
The New Idea
As a Mexican native, Miriam was first exposed to the specialized palliative care of a hospice while visiting her stepfather, who was dying of cancer, in the U.S. In that moment she realized the complete lack of similar end-of-life care for patients in Mexico, where death and suffering are simply accepted by the majority as an intricate part of life against which nothing can be done. Aside from Miriam’s organization in Mexico City, the only other places where palliative care is offered are Guadalajara and Tijuana, where a handful of Mexican doctors underwent medical training in the U.S. However, these services are usually priced out of reach of many of the terminally ill patients in Mexico. Even pain clinics that have purportedly begun offering end-of-life care do not address the psychological and emotional toll both on the patient and his or her family. Miriam therefore became determined to create a culture of palliative care in Mexico’s health care system, founding the Centro de Cuidados Paliativos de México, IAP (CECPAM—Center for Palliative Care in Mexico).
CECPAM’s palliative care model centers upon the delivery of integrated services through an interdisciplinary team consisting of a doctor, a nurse, a thanatologist (i.e. a health worker who specializes in death and dying), and a social worker, who is sent to the patient’s home to provide an initial assessment of the patient’s and the family’s needs, followed by regular home visits. CECPAM also offers psychological services to family members dealing with grief for up to one year after the death of the patient. The care model ensures that the patient enjoys the highest quality of life possible at the end of his or her life and that the family is trained, sensitive, and aware of their own needs as well as those of their loved one.
CECPAM has become a leading voice in Mexico’s nascent palliative care sector, and it is establishing its presence in numerous clinics and hospitals. Since the vast majority of Mexicans are unaware of palliative care, Miriam is working to spread the word about CECPAM’s services and to have her two current teams working at full capacity. In time, she plans to expand beyond Mexico City and the Estado de Mexico, where her services are currently offered, through the National Palliative Care Network that she launched in Mexico to integrate more medical professionals, academics, and the general public into her association. Her goal is to create a citizen-led national palliative care movement—where all Mexican states are represented—to spread this culture and establish national palliative care standards and certifications.
According to Mexico’s Health Secretariat, one-third of the country’s yearly deaths are caused by terminal illnesses—with cancer as the leading cause, and HIV/AIDS, Chronic Obstructive Pulmonary Disease, diabetes and neurological sicknesses not far behind. This situation should logically elucidate an interest among Mexican health officials to offer specialized services that enhance the quality of life of patients at the end of their lives, instead of only pushing forward with curative treatment options, but this is unfortunately not the case.
For people diagnosed with cancer or other terminal illnesses, the psychological effects of the disease can be just as significant as its debilitating physical symptoms. It is quite common for terminally ill patients to become depressed and develop a negative self-image. Recurring thoughts and fears about death make it difficult for them to stop negative thoughts from taking over their daily lives. This is true also for their family members who feel powerless in front of so much suffering. Similarly, medical caregivers struggle with their patient’s pain. They often treat patients as clinical cases, instead of individuals, to protect themselves emotionally. In addition, their technical medical training fails to provide them with the empathetic and emotional skills they need to cope with the difficult situations they are faced with.
Although the concept of palliative care has been widely adopted in the U.S., Canada, and much of Europe, it has not yet made its way into Mexico’s public health institutions and medical schools. Health professionals are trained and equipped to administer curative treatments but, when those fail, palliative care is rarely considered to be a viable alternative. Even when full recovery is clearly out of the question, many doctors insist on continuing with a treatment that ultimately will not help their patients. This not only takes an emotional toll on patients and their families, but it also further weakens Mexico’s health care infrastructure.
Miriam first learned about palliative care and its benefits after visiting her stepfather who was dying of cancer in the U.S. She was both surprised and moved to see that there existed non-curative treatments that could help patients and their families cope with death as peacefully as possible. Upon her return home to Mexico City, she resolved to bring this culture of end-of-life care to her country. In the beginning, Miriam looked for like-minded people who understood the need for and benefits of palliative care in order to devise a strategy that would turn their vision into a reality. They began meeting up once a week for a few years to advance their thinking on this issue.
Frustrated with the group’s lack of action—and with its focus on devising a business strategy that would end up bringing palliative care only to the select few who could afford it—Miriam decided to quit her job and used her personal savings to start what would eventually become CECPAM. From the contacts she had made through her research and the aforementioned working group, Miriam found a thanatologist, a reflexologist and a well-connected individual who shared her vision. Together they began reaching out to various hospitals, clinics and other health institutions to introduce them to the concept of palliative care and encourage them to refer their terminally ill patients to her budding organization. She now works in partnership with 10 pain clinics and three public hospitals, which refer their patients to CECPAM when appropriate. Beyond these referrals, Miriam uses communications media—with radio as the most powerful and effective tool—to educate the public about palliative care and CECPAM’s work. Many of her clients come to her organization as a result of these strategic communication campaigns (i.e. using the web, radio, television, and the written press), as well as from public speaking engagements at various conferences.
CECPAM has formed two multi-disciplinary teams each including one thanatologist (i.e. a specialist in death and dying), one algologist (i.e. a specialist in the medical treatment of pain), one nurse and one social worker. The thanatologist helps patients and their families understand their emotions, promote dialogue among family members, and tries to strengthen their bonds. Her role is to help families navigate the first four emotional stages related to illness and death—denial, anger, regret and depression—in order to get to the final stage: Acceptance. The algologist, on the other hand, focuses on the physical needs of the patient, with a special emphasis on alleviating pain. The nurse, in turn, teaches the patient and his or her family members about nutrition, exercises that increase mobility, and the necessary hygienic procedures they will need to administer in order to prevent the body’s deterioration. As a result, all family members learn how to share caregiving responsibilities, which has both financial and emotional advantages. Finally, the social worker is in charge of understanding the socioeconomic situation of the family to gauge whether or not they are able to take care of the patient and whether they can afford CECPAM’s services. The social worker and sometimes a notary also assist family members as they prepare the legal documents required once the patient passes away.
The CECPAM team delivers its integrated services directly in patients’ homes. During the first visit, the full team visits the patient and his or her family together to evaluate their physical and psychological health, as well as the emotional and financial situation of the family members. Special attention is also paid to the state of family-patient relations, which tend to get strained by the challenges of providing or improvising end-of-life care for their loved ones. Subsequently, patients are visited twice by the algologist, four times by the nurse and two to four times by the thanatologist each month. The nurse and thanatologist visit the patient’s home together: While the thanatologist looks after the needs of the family members in one room, the nurse examines the patient. The nurse next reports back to the family about the patient’s health while the thanatologist has a private session with the patient. When an emergency need arises outside of the planned visits, CECPAM also sends a doctor to the patient’s home to resolve the problem and appease the patient and his or her family.
CECPAM has the capacity to care for 80 patients monthly throughout the city of Mexico and its surroundings. Since 2007, CECPAM has attended to 436 patients and 1,131 family members. On average patients need CECPAM’s services for a period of 1 to 18 months. These services cost CECPAM 3,500 pesos (US$270) per patient per month, but it charges most of its clients between 100 and 500 pesos per month (US$8 to $40), depending on their ability to pay. Although many clients pay the full price, Miriam is committed to ensuring that all families can access CECPAM services: Hence, the tiered-pricing system. Without CECPAM’s support, these families would have to take on astronomical debts or would be forced to forego any type of professional support. Miriam intends to get this model of end-of-life care replicated by other organizations through the nascent National Palliative Care Network, with CECPAM playing an advisory role.
Miriam recognizes that there is a huge gap in Mexico’s health system in terms of the number of medical professionals that are trained to administer end-of-life treatments. In order to address this systemic failure, she knew that new health policies that recognized and regulated such treatments were needed. Miriam therefore joined the efforts of others to help draft and push a national law on palliative care, which was approved by Mexico’s Senate on January 5, 2009. Among other things, this law gives Mexicans the right to suspend curative treatment at the end of their lives in favor of palliative care.
Although a few institutions offer certificates in algology and thanatology, medical students are not required to take classes related to these specializations throughout their studies. Miriam’s medium-term goal is to change this situation and ensure that palliative care becomes a recognized specialization in Mexico’s medical schools. In addition, she is establishing strategic partnerships with large national foundations such as Fundación Flin, which combats the prevalence of nosocomial infections in Mexico. For the first year of this partnership, Fundación Flin has agreed to subsidize the training of two doctors and two nurses in palliative care, with a strong focus on the psycho-emotional health of patients and their families. In the near future, Miriam aims to open up a hospice for short-term care—to allow the patient’s family to go on vacation, for example, without leaving their loved-ones unattended.
Most importantly, Miriam understands the critical importance of growing the palliative care community in all regions of Mexico. For this reason, she has begun forming the National Palliative Care Network: A group of health professionals and like-minded individuals who share Miriam’s vision of creating a movement of palliative care nationally. To date, the network has 127 members from 24 Mexican states. It acts as a community of learning and as a connector to ensure that terminally ill patients who live outside of Mexico City and Guadalajara—the best served cities—also have access to doctors, nurses, and social workers that are knowledgeable about palliative care. Miriam’s goal is for CECPAM to become the leading national organization dedicated to palliative care: An organization that will establish national palliative care standards and certifications, which could then spread and be replicated by members of the National Palliative Care Network.
From an early age, Miriam was involved with social causes. She remembers joining her mother, when she was six-years-old, to assist children with disabilities in summer camps. She was also a dedicated Girl Scout for many years. These experiences shaped her values and gave her the opportunity to develop leadership skills at a young age.
Miriam began her career as a business entrepreneur, opening up the first Ralph Lauren franchises in Mexico with her husband. They established their store in the first condominium mall in the city. Miriam acted as the mall committee’s vice president for two years, and then became president for 11 consecutive years. During that time, she defended the shop owner’s rights, negotiated agreements with the chamber of commerce, and turned the mall into one of the neighborhood’s key attractions.
Although Miriam never lost touch with her commitment to the social sector, she did not immerse herself completely in it until she had a life-changing experience when her stepfather passed away in the U.S. She was impressed by the effectiveness of the palliative care treatment he and her mother received at the end of his life. Returning to Mexico, she took it upon herself to introduce a culture of palliative care to Mexico. In order to understand what thanatologists and algologists go through when they treat patients, she took all the certificates and courses she could to familiarize herself with the field. Although Miriam knew that her vocation was not necessarily to be a health professional herself, she recognized that developing a deep knowledge of the profession would be crucial for her to introduce it and spread it throughout Mexican society.
Miriam is a firm believer that, as one of her professors told her: “One of the most important things in life is to know what your vocation is. Once you find it, you stop working and simply begin to enjoy yourself.”
Recently, Miriam has focused on launching the palliative care model, such as the care provided for those living with a terminal illness. She also aims to drive forward, to teach and diffuse this care model using different means of communication, conferences and workshops, so that it can be copied and applied in the patient's home throughout all states of the Mexican Republic. Support the families of those in need of medicine, support and anything else necessary for the patient to be as comfortable as possible at home. Their goal is to prevent the physical, emotional and material exhaustion of the family in the face of terminal illness.