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.

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.

Cancer Pain Management:

Coming soon!

Sinulog 2014 in Cebu City

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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.

Everyone is at Risk!

Philippine Breast Cancer Network

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! 

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