Palliative Care in Developing Countries
Wednesday, May 28, 2014
Learn to Live Well
I am back in the U.S. now. Still contemplating what I have learned during my 9-months stay in the Philippines. Did I gain deeper insight to answer my burning question? “Why most Americans who prefer to die at home did not get their wish?” This phenomenon happens not only in the U.S.A. but other countries as well. But, why?
One thing certain in life is “Death”; no one can escape from it. But how one recognizes the reality of one’s death is personal and individual. Some dying patients may reveal that they were afraid of pain and suffering. If so, dying patients were prescribed and administered medications, therefore their pain and symptoms were under control. Did they did indeed die well? What I saw from the dying patients’ eyes was an overwhelming emotion of fear and anxiety. What if they were wrong about what they were afraid off! What if there is much more than being “afraid of dying in pain and suffering”
Perhaps, fear is the most important reason. Fear of dying. Fear of dying in pain and suffering. Fear of dying alone. It seems that fear can lead to feelings of dying in agony. But why are dying patients who were fearful of dying alone, as conditions deteriorated or death becomes imminent; why do they feel safer to go to a hospital, even though hospice provide services so that no one should die alone. What is the true reason? Maybe it is hope, hope to live another day or hope for a miracle!
Although I have learned a great deal on how to die well in terms of better managing physical pain and symptoms. Do I really understand the end-of-life experience for sure? It’s likes asking me, “How do I know someone really love me?” Fear, hope or love is an emotion of the way we feel. It is difficult to be certain of what others are thinking or feeling unless they tell me or I see the way they behave around me. Do I need to know for sure? Not really! What really matter is to feel it!
During the Super Typhoon and the earthquakes in the Philippines, I had profound experiences. The feeling of fear “Wow, am I going to die from this?” “Am I going to die alone with no loved-ones around?” Then came the feeling of hope, if I could live another day, to have a chance to tell my loved-ones, “I will be OK”. These thoughts went through my mind then I was really scared. Of what? I was scared of dying. Is this it? My final moments in life. But I did not want to die with neither fear nor sorrow. I thought about my own life. How lucky I was to be born, to be truly loved and to feel love. I kept on thinking about these happy thoughts and feelings. All of the sudden, I felt more relaxed and at peace. If I were to die, I was ready. It’s amazing, yet I cannot describe the feelings! I hope to share with you but only I felt it. I can describe but cannot truly share what I felt that day, even to my loved on who knows me best. I understand now how to truly live life knowing that any moment could be the end.
Wednesday, February 12, 2014
What Would You Say?
What would you say when an ESRD patient tells you “I don’t want dialysis anymore”. As a registered nurse, you realize what the future holds for the patient on dialysis. It is a tough call; when the main reason is due largely to financial constraints. This is an ethical dilemma that the Filipinos nurses shared with me.
The out-of-pocket cost for dialysis treatment in the Philippines is between 3,500 to 4,500 Pesos for one session; not including the cost of daily vitamins, medications, and renal diet. The recommendation for dialysis is usually three times a week, depending on the level of adherence with prescribed regimen. Many Filipino patients skip dialysis sessions and often showed up at the hospitals when they were not feeling well. I ponder how dialysis patients are able to hold down jobs given that each session takes about 3 to 4 hours every other day and most patients often feel extremely tired afterward.
Family ties are extremely important to the Filipinos. Customarily, family members facilitate the dialogue and healthcare decision-making is shared among family members. I was taken by surprise to learn that patients share their thoughts and feelings directly with nurses. The underlying thought of giving up life-saving dialysis treatment due to financial concerns may be for some but may not be for all. Some patients are receiving free dialysis funded by government or affordable cost from private sectors. It is necessary to assess for depression or other issues such as personal dilemmas of meaning of life, quality of life or feeling of being a burden on family. Or maybe the patient truly needed help with how to tell their family about their decision.
I also learn that it is uncommon for Filipinos to question their physicians’ decisions about their healthcare treatment. Some Filipino patients may feel hesitant to talk with their physicians about the decision to withdraw dialysis, then stop showing up at the clinic. At this point how would the patients and family fully understand the effect of their choices what to expect for end-of-life care. Once dialysis stops, death can occur with a few days and could extend a few weeks because of toxins build up in the blood. In most cases the patient’s physical appearance change: swelling in your face, hands, ankles and feet. Because of fluid back up in the lungs, changes in breathing patterns experiencing shortness of breath and congestion that can be heard like a gurgling sound. This sound can be distressing for family to hear even though it is a normal body process. As toxin accumulated in the body as well as central nervous system; it is very common that patient will sleep more; most of the day; increase restlessness, agitated, disoriented, confusion, unresponsive, and oftentimes the patient does not recognize family members. It is difficult to watch someone you love go through the dying process.
During this crucial time, families need help on how to provide palliative care in order to reduce pain and manage symptoms for their loved-one. Empowering the family also helps ease their fears and anxiety that the loved-one is as comfortable as possible and have peaceful death in their home.
Friday, January 31, 2014
Sunday, January 19, 2014
Sunday, January 12, 2014
Fact or Myth: Men Don’t Have Breast Cancer!
I spoke with several Filipino men whose family members died of breast cancer. They openly shared their experiences of how difficult it was for the whole family, however it was clear there was underlying message of how much pain and suffering their loved-one went through. Knowing a little bit about the culture, I had a gut feeling they want to talk to me about it but it was just too hard to talk about it. Why bring back the painful past! Out of respect and from prior experience I did not press the topic, believing this conversation was down a dead-end road. But I was caught off guard when they asked me; “Do men get breast cancer?” From their facial expression, I sensed a different emotion than talking about their relative’s end-of-life experiences. They seemed worried about “What if I will get cancer too” or perhaps thinking about their own mortality. Many questions ran through my mind on how to answer the question. Were they asking me because they really wanted to know? Or they just want some reassurance, “It isn’t going to happen to me”. The truth is I can give all the facts and statistic about men with breast cancer. But I thought about “What is my answer going to do to their feelings? What should I say? What would I say?
Fact 1: All women are at risk. Approximately 70% of breast cancers occur in women with none of the known risk factors. For men, the lifetime risk of getting breast cancer is about 1 in 1,000.
Fact 2: Only about 5% of breast cancers are inherited. About 80% of women diagnosed with breast cancer will be the first to be victims in their families. Breast cancer risk is increased if other members of the family (blood relatives) have had breast cancer. About 1 out of 5 men with breast cancer have a close relative with some type of cancer.
Fact 3: Early detection does NOT prevent breast cancer. Avoiding and eliminating known causes will prevent breast cancer!
Fact 4: Mammography fails to detect as much as 20% of all breast cancer and as much as 40% in women under the age of 50. Because breast cancer is so uncommon in men, so they tend to not be concerned about breast cancer and its possible warning signs. Some men even ignore the symptoms and delay medical treatment until the cancer has reached an advanced stage. This is why male breast cancers are likely to be stage III or stage IV when diagnosed.
Fact 5: 1 out of 4 who are diagnosed with breast cancer die within the first five years. No less than 40% die within 10 years.
Fact 6: Risk factors are not necessarily causes of breast cancer. Enough evidence exists linking environmental pollution and contamination to cause breast cancer. The risk factors in men are alcohol, obesity, Estrogen treatment, or radiation exposure.
Fact 7: The global incidence of breast cancer has tremendously risen by 256% in the past 30 years with Southeast Asia increasing by 479%! And the ‘authorities’ and ‘experts’ that should know; don't know why.
Fact 8: Breast cancer is the leading killer of women ages 35 to 54 worldwide. More than a million women develop breast cancer without knowing it and almost 500,000 die from it every year.
Fact 9: 1 out of 13 Filipino women will develop breast cancer in her lifetime. The province of Pampanga has the highest incidence rate in the entire country.
Fact 10: The Philippines has the highest incidence rate of breast cancer in Asia and registered the highest increase of 589% among 187 countries over a 30 year period from 1980 to 2010.
Fact 1: All women are at risk. Approximately 70% of breast cancers occur in women with none of the known risk factors. For men, the lifetime risk of getting breast cancer is about 1 in 1,000.
Fact 2: Only about 5% of breast cancers are inherited. About 80% of women diagnosed with breast cancer will be the first to be victims in their families. Breast cancer risk is increased if other members of the family (blood relatives) have had breast cancer. About 1 out of 5 men with breast cancer have a close relative with some type of cancer.
Fact 3: Early detection does NOT prevent breast cancer. Avoiding and eliminating known causes will prevent breast cancer!
Fact 4: Mammography fails to detect as much as 20% of all breast cancer and as much as 40% in women under the age of 50. Because breast cancer is so uncommon in men, so they tend to not be concerned about breast cancer and its possible warning signs. Some men even ignore the symptoms and delay medical treatment until the cancer has reached an advanced stage. This is why male breast cancers are likely to be stage III or stage IV when diagnosed.
Fact 5: 1 out of 4 who are diagnosed with breast cancer die within the first five years. No less than 40% die within 10 years.
Fact 6: Risk factors are not necessarily causes of breast cancer. Enough evidence exists linking environmental pollution and contamination to cause breast cancer. The risk factors in men are alcohol, obesity, Estrogen treatment, or radiation exposure.
Fact 7: The global incidence of breast cancer has tremendously risen by 256% in the past 30 years with Southeast Asia increasing by 479%! And the ‘authorities’ and ‘experts’ that should know; don't know why.
Fact 8: Breast cancer is the leading killer of women ages 35 to 54 worldwide. More than a million women develop breast cancer without knowing it and almost 500,000 die from it every year.
Fact 9: 1 out of 13 Filipino women will develop breast cancer in her lifetime. The province of Pampanga has the highest incidence rate in the entire country.
Fact 10: The Philippines has the highest incidence rate of breast cancer in Asia and registered the highest increase of 589% among 187 countries over a 30 year period from 1980 to 2010.
Everyone is at Risk!
Saturday, January 4, 2014
Long Road Ahead for Palliative Care: the U.S. and the Philippines
Everyone has the right to
palliative care, is a
basic human right. No one should have to suffer from avoidable pain or
manageable symptoms. However, only 20 out of 234 countries have effectively integrated palliative care into their healthcare system, the other 42% have no delivery system for palliative care services, and 32% service delivery reaches only a small percentage of the
population. Some 80% of the world’s population lack adequate access
to medication needed for palliative care. In the U.S., hospitals
or nursing home facilities are most common to receive palliative care services;
however, approximately 63%
of hospitals report a palliative care program.
Meanwhile,
palliative care can be defined differently between developed and developing
countries. In the U.S., palliative
care is a specialized medical consist of physicians, nurses, social
workers, and other healthcare professional working together with primary
physicians providing care for patient with cancer, Alzheimer, CHF, COPD, kidney
disease, Parkinson, ALS, HIV/AIDS, and many more. The goal is
relief of symptoms such as pain, constipation, nausea, short of breath, loss of
appetite, insomnia, and depression resulting from disease process or medical
treatments. When patients are able to function at their best possible level;
resulting in improved quality of life and well-being of patients and their
family. Palliative care can and should be delivered at the beginning of
diagnosis along with curative treatment. Why don’t all terminal ill patients
receive palliative care?
In
the Philippines, palliative care provides mostly pain control for cancer
patients whereas hospice has a strong association with dying and support for
the bereaved. The term “hospice” does not mean end-of life care rather “a home,
building or institution for the terminally ill to receive specialized
palliative care regardless of capacity to cure the disease. Contrary to the
U.S. hospice is based on the timeline of 6 months or less to live rather than
the functionality, disability and severity of illness of dying patients;
hospice programs historically were more likely to be an effective method in
relief of suffering during a cancer death but not so for Alzheimer, dementia or
CHF. The challenge of selecting U.S. hospice benefit is giving up curative
medical treatment; therefore, some patients sign on with hospice when they have
exhausted curative treatment or at the end of their rope.
The
challenge is that palliative care and hospice are currently not part of the
government medical insurance program in the Philippines. In 2013, the
country had nearly 106 million in population
with a life expectancy of 72 years. PhilHealth, a government-owned
insurance agency provides universal health coverage, however struggles with
coverage with high unemployment and underemployment and access as more than
half of healthcare facilities are privately-owned. According to The Philippine Department of Health (DOH), by
2010, 62% of population covered by National Health Insurance Program (NHIP) but
only 73% had access to affordable essential drugs in 2009 and 54.3% out of
pocket expenditure for healthcare in 2007. The reality is that
more than 80% of Filipinos cannot afford out of pocket expenses needed for
basic medical care.
Cancer
is the third leading cause of Death in the Philippines. Philippine
Cancer Society (2010) survey indicates that 13% males and 12% female would
have some types of cancer if they live beyond age 75. Breast
cancer is most common cancer followed by cancer of the lung, liver, cervix,
colon, thyroid, rectum, ovary, prostate and non-Hodgkin lymphoma.
Since majority of Philippine families cannot afford out-of-pocket medical
expense for early screening and prevention, the majority of cancer cases were
not diagnosed and treated at an early curable stage. Only 30% of patients
who have been diagnosed with cancer received medical treatments while the 70%
did not return for treatment due to “they are afraid of the diagnosis,
financial problem and a matter of attitude and perception” said Dr.
Saleshe Tracy Anne Fernandex of
Breast Cancer Clinic at the Vicente Sotto Memorial Medical Center (VSMMC) in
Cebu City. As
a result, breast cancer survival rate was the lowest among 15 Asia countries
while 10% male and 7% female of cancer patients would have died before age 75.
There
are 34 organizations, 108 hospice and palliative care services providing a
range of inpatient, outpatient and home care in urban cities. Philippines
consists of 7,107 islands each has their own unique cultural identity and
dialects making logistically difficult to provide services. Most hospice
organizations are providing fee for service and free services in order to serve
the indigent. During the
end-of-life care, Filipino family members are primary caregivers for patients. Senator Marcos Jr. has introduced Senate
Bill 3342, “the
Palliative and End of Life Care Act” to provide benefit of 60 days a year
leave with full pay for immediate family members or relatives who care for a
critically ill. If the bill is passed; all government and private
hospitals and health centers is required to provide palliative care and end of
life services to all patients with life-threatening illness.
There is work to be done in both countries on how to
promote awareness and access to palliative care. Let's start with education
first!
Wednesday, January 1, 2014
WHY I Do What I Do
As a child growing up in Thailand my grandparents taught me the importance of motivation, commitment to community, and on-going learning. I embraced these ideals and carried them with me when my family moved to New York City to begin a new life; in the process I met Glenn, love of my life. I graduated top of my class with a BS degree in Accounting from Fordham University while working full time through hard work and dedication. I worked during the day, went to school in the evening, and studied at night through this vigorous program considering English is my second-language. I can still recall my grandfather saying “You don’t travel half of the world to give up.” Glenn was always by my side with words of encouragement. I learned the importance of words, especially to love-ones and how we can inspire others to keep on doing until they reach their potentials.
At Fordham University, I also learned the deep
meaning of dedication, discipline, leadership, knowledge, and strength;
reinforced later from inspirational life stories of Fordham alumnus, Vincent Lombardi who exemplified in "the Pursuit of Excellence". His speech, "We are going to relentlessly chase perfection, knowing full well we will not catch it; because nothing is perfect. But we are going to relentless chase it, because in the process we will catch excellence. I am not remotely interested in just be good". This tradition of pursuit of greatness is instilled in me and has shaped my character to always do my very best of everything I do.
Glenn and I had a dream
of owning a business. We were successful
running our own import/export and retailed company. However, a large chunk of our life was fading
like the movie “Groundhog Day” feeling stuck to the same routine. Time was just passing us by the next thing we
knew 10 years had gone by. The feelings of discontentment
led us to explore a pursuit
of happiness for something else beyond the material things. After selling the business, we took a break
to travel the world. The beginning of our salvation feeling
renewed and refreshed; after 6 months of traveling and living on beautiful
beaches and islands, we got bored. There
had to be more. We became
involved with volunteer work in Thailand where we taught English and cared for
children with HIV. The experience
changed both of our lives.
I grew up in a household of nurses and recall heartfelt stories
from family members who were deeply committed to the nursing profession and
patient care. They spoke of nursing as a
professional practice and a “calling” whereby nurses are engaged in caring for
others and making a difference in their lives.
We
began to feel the positive emotion of what they were talking about “helping
others” and not just doing things for our self- interest. Gandhi said, “The
best way to find yourself is to lose yourself in the service of others.” We redirected our focus toward living a more
meaningful life by devoting ourselves to the well-being of others. These factors make perfect sense to us and caring has become an
integral part of who we are. We then made the
decision to become registered nurses and start a new chapter of our lives.
Last year, we had the unique opportunity of completing a nursing practicum
for master degree program in Thailand. During this course of study, we became
aware of the need for competent palliative care, education, and research on
palliative care in Asia and really want to help. My ultimate goal is to develop nursing
practice modalities that will improve the quality of end of life care. Through my Fulbright research project, I will
be able to learn more about Palliative Care in the Philippines and the
challenges and opportunities inherent in providing care in a resource-limited
country. I am thrilled to be a Fulbrighter, but most importantly is to deepen my knowledge to
ease suffering of people. This is what I truly am passionate about.
I truly want to make a different and I do not mean that one has to leave
the country to do so. I ask myself every
day; “How can I be a better partner, daughter, sister, or human being? What do I want to get better at? Make conscious decision to be
kind, be considerate of others, and always give all I got of what I do.
Through our life changing experiences, we realize
that happiness is a state of mind. Happiness
is already here within us. There is
nowhere else to be. It is the quality of
this present moment. Play attention to
our surroundings, what everyone is thinking or feeling. Play attention what we are doing or
saying. Pay attention to life. There are so many things in this world that we
can be happy about and we should not take life for granted. I read the book “The Top Five Regrets
of the Dying,” was written by Bronnie Ware, an
Australian palliative care nurse.
Bronnie eloquently expresses the significance of these regrets by
applying the lessons to her own life.
The heartfelt story explains how everyone can make conscious choices
while we still have time to address these issues and to die with peace of mind
of no regrets.
Working with the dying, every
death witnessed should serve as a reminder that “I” should have the courage to
live a life true to myself. I do not
want to feel regret that my dreams are not fulfilled settling for a
mediocre existence because fear of change or stuck in my
comfort zone. We maybe have 100
years or less to live. Every day goes
by, we get older not younger. Everyone
we love and we will die. The one
definitive true we can count on. The
moment to be happy is right here, right now, and counting down. Surround yourself with people that you enjoy
being with. Follow your heart to do
things that excited you, make you feel good.
Live your life with positive attitude each and every day. Select your thoughts that put you in good mood. Be your authentic self, be you, and be proud
of who you are. Life is so sweet but so
short, embrace every little moment right now.
This is the story of an ordinary person doing ordinary human things to make her happy.
Usar Suragarn, MSN, BSBA, RN
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