The Importance of Palliative Care
“Having my father in palliative care gave us enormous peace of mind.”
– Adriana Preciado Pérez, whose father, Pedro Preciado Santana, died of lung cancer in 2011 after a long and painful sickbed.
Palliative care seeks to improve the quality of life of
patients, both adults and children, facing life-limiting or terminal illness.
Its purpose is not to cure a patient or extend his or her life. Palliative care
prevents and relieves pain and other physical and psychosocial problems. Dame
Cicely Saunders, the founder of the first modern hospice and a lifelong
advocate for palliative care, points out that palliative care is about
“adding life to the days, not days to the life.” The World Health
Organization (WHO) recognizes palliative care as an integral part of healthcare
that should be available to those who need it. While
palliative care is often associated with cancer, a much wider circle of
patients with health conditions can benefit from it, including patients in
advanced stages of neurological disorders, cardiac, liver or renal disease.
One key objective of palliative care is to offer patients
treatment for their pain. Chronic pain is a common symptom of cancer and
HIV/AIDS, as well as other health conditions, especially in the terminal phase
of illness. The WHO estimates that around 80 percent of
both cancer and AIDS patients and 67 percent of both patients with
cardiovascular diseases and chronic pulmonary diseases will experience moderate
to severe pain at the end of life.
Moderate to severe pain has a profound impact on quality of
life. Persistent pain has a series of physical, psychological, and social
consequences. It can lead to reduced mobility and consequent loss of strength;
compromise the immune system; and interfere with a person’s ability to
eat, concentrate, sleep, or interact with others.
A WHO study found that people who live with chronic pain are four times more
likely to suffer from depression or anxiety. The
physical effect of chronic pain and the psychological strain it causes can even
influence the course of disease, as the WHO notes in its cancer control guidelines,
“Pain Can Kill.” Social
consequences include the inability to work, care for oneself, children or other
family members, participate in social activities, and find closure at the end
of life.
A wealth of research studies has shown the effectiveness of
palliative care and some studies have found that offering palliative care leads
to overall cost savings for health systems due to reductions in use of
emergency health services and hospital admissions.
According to the WHO, “Most, if not all, pain due to
cancer could be relieved if we implemented existing medical
knowledge and treatments” (original emphasis).
The mainstay medication for the treatment of moderate to severe pain is
morphine, an inexpensive opioid that is made of an extract of the poppy plant.
Morphine can be injected, taken orally, delivered through an IV or into the
spinal cord. It is mostly injected to treat acute pain, generally in hospital
settings. Oral morphine is the medicine of choice for chronic cancer pain, and
can be taken both in institutional settings and at home. Morphine is a
controlled medication, meaning that its manufacture, distribution, and
dispensing is strictly regulated both at the international and national levels.
Medical experts have recognized the importance of opioid
pain relievers for decades. The 1961 Single Convention on Narcotic Drugs, the
international treaty that governs the use of narcotic drugs, explicitly states
that “the medical use of narcotic drugs continues to be indispensable for
the relief of pain and suffering” and that “adequate provision must
be made to ensure the availability of narcotic drugs for such purposes.”
The World Health Organization has included morphine in its Model List of Essential
Medicines, a list of the minimum essential medications that should be available
to all persons who need them, since it was first established.
Yet, approximately 80 percent of the world population has
either no or insufficient access to treatment for moderate to severe pain and
tens of millions of people around the world, including around 5.5 million
cancer patients and one million end-stage HIV/AIDS patients, suffer from
moderate to severe pain each year without treatment.
But palliative care is broader than just relief of physical
pain. Other key objectives of palliative care may include the provision of care
for other physical symptoms as well as psychosocial and spiritual care to both
the patient and their family. Life-limiting illness is frequently associated
with various other physical symptoms, such as nausea and shortness of breath,
that have significant impact on a patient’s quality of life. Palliative
care seeks to alleviate these symptoms.
People with life-limiting illness and their relatives often
confront profound psychosocial and spiritual questions as they face
life-threatening or incurable and often debilitating illness. Anxiety and
depression are common symptoms.
Palliative care interventions like psychosocial counseling have been shown to
considerably diminish incidence and severity of such symptoms and to improve
the quality of life of patients and their families.
The WHO has urged countries, including those with limited
resources, to make palliative care services available. It recommends that
countries prioritize implementing palliative care services in the
community—providing care at people’s homes rather than at
healthcare institutions—where it can be provided at low cost and where
people with limited access to medical facilities can be reached, and in medical
institutions that deal with large numbers of patients requiring palliative care
services.
In recent years, the WHO and the World Bank have urged
countries to implement free universal health coverage to ensure that all people
obtain the health services they need without suffering financial hardship when
paying for them.
Palliative care is one of the basic health services that the WHO and the World
Bank say should be available under universal health coverage, along with
“promotive, preventive, curative, and rehabilitative” health
services.
While México is still a relatively young nation, a
rapid demographic shift is expected to occur in the next few decades. In 2010,
only 7.1 million Mexicans were 65-years-old or older. By 2020, that number will
reach 9.8 million and by 2050 23.1 million. Meanwhile the prevalence
of chronic illnesses, such as cancer, heart disease and diabetes is on the rise
and will continue to increase as a result of, among others, the aging process.
Thus, México’s healthcare system can expect a wave of patients
with chronic illnesses that will seek health services in years to come.
México’s
Healthcare System
In 2003, México
reformed its healthcare system to provide insurance for millions of its uninsured
citizens. Following these reforms, it has achieved near
universal health insurance coverage.
Prior to the reform, México
only provided health insurance through social security schemes targeted toward
salaried workers in the formal sector of the economy and civil servants. Two
social security programs—the Mexican Social Security Institute (IMSS) and
the Institute of Social Security and Services for Government Workers
(ISSSTE)—insured approximately 50 million people. Moreover, a small percentage of Mexicans were covered
by private insurance. Yet, the social security schemes and private
insurance left approximately half of México’s more than 110
million person population uninsured—principally low-income and unemployed
individuals.
The uninsured faced
impoverishing out-of-pocket costs, ill-defined benefits, and medicine shortages
due to budgetary limitations. Thus, as Dr. Julio Frenk, former Secretary of
Health of México, and others observed in an article in Lancet: “[The]
Mexican health system was organized around a segmented model…and marked
by the separation of health-care rights between the insured in the salaried,
formal sector of the economy and the uninsured.”
Seeking
to reduce and eventually eliminate segmentation in the provision of healthcare
services, México created Seguro
Popular, a publically subsidized health insurance plan available to Mexicans
not covered by a social security scheme or private insurance. Seguro Popular provides a specific package of
personal healthcare interventions and medicines at the primary and secondary
levels of care. As of 2014, the package—the Universal Catalogue
of Health Services—contains 285 healthcare interventions. Additionally, people covered by Seguro Popular are
eligible to receive care for an enumerated list of complex medical procedures,
including treatment for pediatric cancers and HIV, through the Fund for the
Protection against Catastrophic Costs (Fondo de Protección contra Gastos
Catastróficos). As of 2013, Seguro Popular provided health insurance
to approximately 55.6 million Mexicans.
Under the current healthcare
system, each social security scheme and the Seguro Popular are vertically
integrated. In other words, each insurance scheme maintains their own source of
funds, service packages, and system of hospitals and clinics. The fragmentation of México’s insurance
schemes creates disparate standards and operating norms at health institutions
across the country. Moreover, since México’s health insurers
do not cross-honor the policies of the other insurers, patients may be denied
access to services at certain hospitals because of the type of insurance they
hold.
Remedios Ramírez Facio’s Story
Remedios Ramírez Facio (73) lives on a small plot of
land in Atitalaquia, a village in the state of Hidalgo in Central México
near one of the country’s largest oil refineries.
She and her husband live in a small one-story brick building, painted bright
orange, with corrugated roofs. In front, there is an open area with a table and
some chairs where much of the family’s life transpires. On the other side
of their property live Ramírez’ animals: dogs, chickens, ducks,
and several large pigs. Closer to the road, a visitor’s eyes are drawn to
a colorful wall display of plants and flowers; these were more beautiful, Ramírez
says, before she fell ill with cancer.
Ramírez and her husband have lived here for decades,
raising all 7 of their children in their modest living quarters. Theirs is an
impressive dynasty: 24 grandchildren, 19 great-grandchildren and 3 great-great-grandchildren,
with several more on the way. The neighborhood around them is dotted with
similar small houses where many of her children and their families live.
When a Human Rights Watch team visited Ramírez on a
warm Sunday in late August 2014, she was full of energy. In the morning, she
went to church, standing through an hour-long service. Upon returning home, she
and her daughters prepared a big meal—it is tradition for the family to
come together on Sunday afternoons. Even when most of the family sat down to
eat, she kept busy, making sure everyone else was getting enough.
Her energy levels were remarkable for a woman whose
pancreatic cancer has metastasized to her lungs and liver. Her condition was
all the more notable given how she had felt a few weeks earlier. Suffering from
severe abdominal pain and nausea, Ramírez had no energy. She could not
sleep and had lost her will to live. Her daughter, Orlanda Hernández,
said: “She didn’t want to eat. She would tell us that it hurt.
She was weak. We didn’t see her improve. She was
frustrated…”
Ramírez attributes her remarkable turnaround to the
fact that she is now receiving palliative care at México’s
National Cancer Institute. Before, she said, she had complained about pain to
her doctors, but she had not received appropriate medications for it. In July
2014, the local hospital in Hidalgo referred her to México’s
National Cancer Institute; there physicians determined that she had pancreatic
cancer that was not treatable and they referred her to the palliative care
unit. The physicians there assessed Ramírez’ pain and other
symptoms and put her on a small dose of morphine and nausea medication.
The impact of this simple invention was drastic. As Ramírez
put it,
[With the pain] I didn’t have the desire to do
anything. I wasn’t hungry and didn’t want to walk…nothing. I
felt very tired and didn’t have the urge to do anything so I would lie
down. I felt frustrated when people spoke to me. It would anger me when people
spoke to me. [With palliative care] I have come back to life.
But there is a complication. In all of the state of Hidalgo,
home to more than 2.5 million people, not a single public hospital offers
palliative care. Ramírez’s daughter told Human Rights Watch that
she had recently taken her mother to the local hospital in Tula, the closest
town, because she was not feeling well; the doctors there had no idea what
palliative care was and could not attend to her mother’s needs.
Thus, Ramírez has to travel to México City
every few weeks to go to the National Cancer Institute, a trip that takes
almost the entire day. Luckily, she usually does not have to go on public
transport; the local community clinic tries to make an ambulance
available—for payment—to people who need to travel to hospitals in México
City for medical care.
Even so, the trip to México City is long. The
ambulance, which collects multiple patients and drops them off at different
hospitals all over México City, picks up Ramírez at around 4:30am
so they can get to the hospital in time for the appointment. The ambulance
usually does not get her back home until around 4:30pm. The round-trip cost
–200 pesos (about US$15)–is more than Ramírez and her
husband normally spend in weeks.
On September 1, Ramírez had an appointment at the
hospital, but the ambulance was not available. So she and her daughter had to
travel by public transport. They left home shortly before 5am to walk 45
minutes through the darkness to the closest bus stop. As her daughter described
the journey:
To get to the cancer hospital, we need to take a combi [a
small bus]. Then we take a bus that takes us to the bus depot. We then get
another bus that takes us to Taxqueña. In Taxqueña, we get yet
another bus that takes us to the hospital. There are four buses from here to
there.
Even with help from the Human Rights Watch team, which was
filming Ramírez’ journey and took her part of the way by car, the
trip was arduous. Upon arriving at the hospital, Ramírez said: “I
get very tired travelling all the way.”
On the day we accompanied her, Ramírez was in fairly
good health. As her illness progresses, however, her condition is likely to
deteriorate, making the trip—by ambulance or public
transport—increasingly difficult. Indeed, many people with illnesses like
Ramírez’ can no longer make the journey at some point. In such
cases, the hospital recommends that relatives go by themselves to pick up
prescriptions and medicines. But when the palliative care team is no longer
able to speak with and examine the patient, the care they are able to provide
is limited.
But on September 1, Ramírez made it to the hospital
and was able to benefit from the services it offered, and meeting a physician,
psychologist and nutritionist. The physician extended her prescription for
morphine and added a medication for a cough that had started bothering Ramírez
a few days earlier. The physician and psychologist also spoke openly with Ramírez
about her illness and her prognosis—a tough conversation during which she
tearfully expressed her anxiety over leaving behind her children, especially
her son who, due to a recent accident, is in a wheelchair.
No matter how difficult it was to face her own mortality, Ramírez
left the hospital in an upbeat mood. She said she felt grateful that the
doctors had spoken with her openly and with empathy: “It gives me more
desire to live.”
Pedro Preciado Santana’s Story
Pedro Preciado Santana, the 65-year-old owner of a carpentry
shop in Guadalajara, México, was a vivacious man. He loved sitting on
the porch outside his home in the afternoons, waving and chatting with friends
and neighbors passing by, and watching the park across the street. His
daughter, Adriana Preciado Pérez, said everybody in their neighborhood
knew him.
In January 2010, an incapacitating pain in Preciado
Santana’s shoulder rudely interrupted this daily routine. His daughter
told Human Rights Watch that, at times, her father would turn completely white,
his blood pressure would drop and he would break out in a sweat. Sometimes the
pain was so severe that his family would rush him to the emergency room.
Doctors struggled to determine what caused the discomfort.
After numerous fruitless visits to public and private clinics, a neurosurgeon
recommended surgery in July 2010 for what he thought was a compressed vertebra.
However, the surgical intervention did nothing to diminish the pain. In fact,
that fall, Preciado Santana’s pain worsened and he repeatedly contracted
pneumonia.
Preciado Santana underwent more medical exams and eventually
his doctors found a malignant tumor in his right lung. Despite the grim
diagnosis, Preciado Santana decided to fight. “My father loved life and
he wanted to do everything possible,” his daughter said. “He
didn’t choose to go. He was taken away from us.” Two courses of chemotherapy
and radiation at Centro Medico Nacional de Occidente, a hospital of the Mexican
Social Security Institute (IMSS) where Preciado Santana was insured, managed to
reduce the size of the tumor significantly, and his pain diminished as well.
But doctors thought that his immune system was too compromised for him to
undergo a third round of chemotherapy and radiation; they told Preciado Santana
that his case was terminal and that he had run out of options.
Although he could no longer be cured, Preciado
Santana’s healthcare needs were possibly greater than ever before in his
life. As the cancer grew, and spread, Preciado Santana experienced ever more
severe pain, as well as various other symptoms. Due to emphysema, a destructive
process in the lungs, he was constantly gasping for air. Preciado Santana
struggled emotionally with his prognosis and became increasingly depressed.
These are all symptoms that can be controlled well through palliative care.
Preciado Santana’s hospital, however, did not have a
palliative care service. As a result, he and his family had to navigate their
way through this very difficult period with little or no professional guidance
and very little help from the hospital. Without anyone in his hospital seeking
to coordinate his case, the care he received was highly fragmented, often
inadequate, and required numerous hospital visits even as travel became
difficult and painful. In fact, his last few months he and his family struggled
not only with his disease but also with the very healthcare system that was
supposed to care for him.
For example, Preciado Santana’s daughter would take
him to the pain clinic at the hospital in his wheelchair with his oxygen tank
before 7:00 a.m. to take his place in a cramped unventilated waiting room that
tended to be full of other patients, some of whom were acutely ill. Sometimes,
she said, her father would wait for six hours before the doctor could finally
see him. Moreover, only one doctor at the hospital could renew his prescription
for morphine. On several occasions, Preciado Santana’s daughter had to
return at a later time or date to get the prescription because that doctor had
left for the day.
Even in the advanced stages of his illness, when the trip to
the hospital had become very difficult because of severe swelling, bed sores
and skin problems, the doctors at the pain clinic insisted that Preciado
Santana come in person. His daughter said: “When I told the doctor that I
could not take my father to the hospital anymore, the doctor responded:
‘If you don’t bring him, we won’t give him the
medicines.’” With no other choice, she continued to bring him to
the hospital in their private car. She said: “I would drive slowly. Any
bump, any pothole hurt him.”
When Preciado Santana’s daughter noticed that her
father was becoming increasingly introverted—he stopped being his
talkative self—and depressed, she requested a consult with a
psychologist. However, the psychology department could not schedule the
appointment until four months later. By that time, Preciado Santana was too ill
and weak to be able to benefit from the psychologist’s services.
As time went by, the severity of Preciado Santana’s pain
kept increasing and the morphine dosages that doctors at the pain clinic
prescribed became insufficient to control it. Yet, the doctors at the clinic were
reluctant to increase the dose. His daughter told Human Rights Watch: “They
treated me as if I was trying to sell the morphine; they were never able to
control his pain.”
Although the hospital had a home-based care service for the
chronically ill, this service was not adapted to the needs of patients with
limited life expectancy. When Preciado Santana’s daughter inquired about
enrolling her father, she was told it could not take new patients for a period
of several months. An opening was eventually available, but it was too late; as
Preciado Santana had already died.
Disillusioned by the quality of the services provided by the
hospital, Preciado Santana’s daughter began searching for other options
to get proper care for her dying father. In May 2011, the director of a private
hospice advised her to see Dr. Gloria Domínguez, who leads an integrated
palliative care team at Hospital Dr. Ángel Leaño of the
Autonomous University of Guadalajara. Her team accompanied Preciado Santana and
his family in the last few months of his life, visiting him at his home and
advising his daughter by telephone whenever new symptoms or complications
arose. Although his daughter had to continue taking him to some follow up
appointments at Centro Medico for insurance reasons, the family could now rely
on the palliative care team in the day-to-day care of Preciado Santana.
The difference, his daughter said, was enormous. Dr. Domínguez
and her team attended to all her father’s needs at once, providing
medical treatment, psychological support and guiding the family in taking care
of him at home. By helping the family understand what they could expect to
happen as Preciado Santana drew closer to his death and how they could respond,
the team also gave the family, in Adriana Preciado’s words,
“enormous peace of mind.”
Preciado Santana eventually passed away in September 2011 in
his home, as had been his express wish.
