Pediatric Palliative Care: Addressing the Complex Needs of Children

One of the most difficult services to find in the Philippines is the provision of Pediatric Palliative Care. While there is a growing recognition of its significance in the past decade, integrating Pediatric Palliative Care into the healthcare system and providing access to it needs to improve. There is a need for a specialized medical approach that provides comprehensive comfort and support to children with serious illnesses and their families. It is care that focuses on addressing the physical, emotional, social, and spiritual needs of children with life-threatening conditions. It emphasizes improving the quality of life for these patients through pain and symptom management, communication, and coordination of care. Goals of pediatric palliative care often include enhancing the child's comfort, ensuring shared decision-making, reducing hospital readmissions, and providing grief support to the family.

Pediatric Palliative Care must be employed throughout the continuum of care for children with serious illnesses, and it must be introduced early enough to enable better outcomes. It can actually be introduced at any stage of the illness and can be provided alongside curative treatments. Palliative care teams work collaboratively with medical professionals, parents, and other relevant individuals to develop an integrated care plan tailored to the child's unique needs. Services may include pain management, psychosocial support, skilled nursing care, respite care, bereavement support, and counseling.

The improved health outcomes of Pediatric Palliative Care are due to its strong focus on managing pain and other distressing symptoms that can significantly improve a child's overall well-being. It is care that is holistic. It addresses the physical, emotional, social, and spiritual dimensions of the child's life, helping to reduce suffering. This results in a better quality of life for both the child and their family.

Pediatric palliative care recognizes the importance of supporting the family and aiding access to community resources. Social workers work hand in hand with physicians and nurses to provide emotional and psychosocial support and facilitate communication and decision-making. This is especially important for patients who are not that well-off financially.

The palliative care team collaborates with the child's primary healthcare providers and other specialists, ensuring seamless transitions between care settings. At every stage of the illness trajectory, support is available. It encourages open and honest conversations about the child's illness, prognosis, and treatment options, empowering families to make well-informed decisions.

However, many families face challenges in accessing pediatric palliative care due to geographic or financial barriers, lack of awareness, or shortages of healthcare professionals trained in pediatric palliative care. Palliative care can also bring up emotional and existential challenges for families, particularly when discussing end-of-life matters, which can be overwhelming for some. Some healthcare providers may have limited understanding or training in pediatric palliative care, leading to misconceptions or discomfort in initiating discussions.

The field of pediatric palliative care continues to evolve and grow. It is anticipated that there will be increased awareness and integration of palliative care principles into various settings, including primary care practices and hospitals. Developing innovative approaches, such as telemedicine and mobile health technologies, may help bridge the gap in accessing palliative care for remote or underserved populations. Additionally, advancements in research and education are essential to improve the effectiveness, accessibility, and quality of pediatric palliative care.

Pediatric palliative care aims to improve the quality of life for children with serious illnesses while providing comprehensive support to their families. Addressing physical, emotional, social, and spiritual needs offers a holistic approach to care. While challenges exist, ongoing efforts to increase awareness, improve access, and advance research hold promise for the future of pediatric palliative care, ensuring that children and their families receive the support they need during challenging times.

SURVIVING NEGATIVITY

“Optimism is the one quality more associated with success and happiness than any other.”

Brian Tracy

It is a challenging and crazy world. But we continue to exist.

I heard a friend tell me that to live in this world is to survive. There are always obstacles to hurdle, and once we get over it, we move on to the next. The walls to traverse may differ between us, but the wall is there - imposing its will. Those walls will not move, so we must move it, tear it down, or pass through. The decision on what to do ultimately rests in us.

Recently, we have seen how anger can rear its ugly head when provoked by the way of road rage. Humans are triggered by perceived impartiality or inequality, or when a lack of respect is felt. In a perfect world, these would be easy to brush off, but we are not in a perfect world. We also know that not all of us are gifted with the traits of patience and understanding, so we always need to work on managing our emotions.

To help us make decisions (yes, ultimately, our reactions are a result of our decisions), our thoughts need to be conditioned to neutralize or even eliminate negativity. It is said that humans have this natural tendency to put themselves down and think negatively, so there has to be a conscious effort to resist this inclination.

What, therefore, is the mindset of a positive individual, and how can we adopt it?

First, we must avoid negativity. Even in the hour of death, as we face sickness and disease, we must look at the bright side. A suffering individual may find reprieve from a long history of pain and discomfort when the time comes to leave. Shunning negative thoughts does not mean indifference – it conveys a recognition that not all is lost for there are still people who love and need us.

Second, our words lead us to our emotions. When we fill our language with positivity and good vibes, positivity seeps into our consciousness and uplifts others. We are then strengthened by the goodness around us, even in moments of grief and despair. This is why when a loved one is lost, we give our condolences and render words of encouragement.

Third, we must remain grateful. In the face of loss, we find things that we have. Family, friends, a roof to sleep under, and a job allow us to offset whatever we lack in physical attributes, financial stability, and talent. Thankfulness also means being able to pay it forward. We must actively search for opportunities to be a blessing to others, so we see that our miseries can be handled with ease.

Fourth, our health must be at its best so that we can do and achieve more. Nothing dampens a day more than having uncontrolled pain and unmanageable symptoms. We must also exert effort to minimize pain and discomfort for others. If health problems cannot be prevented, at the very least, they must be managed well through proper diet, exercise, and medications.

Lastly, find positive, well-meaning people. These are individuals with the same thrust as ours – to help and be a positive influence. Counseling others to limit negativity is also imperative. Seek to make a happy community that uplifts and energizes so you will not see the dark side of the day.

Rekindle optimism, and spread good vibes!

PALLIATIVE CARE BENEFITS IN CANCER CARE

"I implore people to check out hospices - if you've got the choice to use them, then use them. It's not all doom and gloom."

-          Jonnie Irwin, lung cancer patient

About 1.7 million people die of lung cancer each year (1).  It accounts for about 1/5 of all cancer-related deaths worldwide. Palliative care is medical care aimed at improving the quality of life of seriously ill patients. While it does not have the goal of providing curative treatment in all cases, its principle lies in improving quality of life and providing comfort. The holistic nature of palliative care also ensures that it is not just physical symptoms that are addressed, but the psychosocial aspect of disease as well.

Previous studies have been done to determine the actual benefits of palliative care. In lung cancer, palliative care improves patient and caregiver outcomes and is also associated with fewer medical interventions near the end of life (2). Healthcare costs and utilization are also improved (3).  Palliative care is associated with decreased cost, and as the clinical and economic benefits of palliative care for metastatic cancer patients become evident, more patients are seeking treatment (4).

 What specific benefits does palliative care provide for cancer patients? Research has shown that there are benefits for the patients in the following aspects: symptom management, knowledge of the disease, and holistic approach.

Some of the common physical manifestations of cancer include pain, anorexia, cachexia, fatigue, nausea, constipation, dyspnea, and malignant bowel obstructions. These physical symptoms as well as the related spiritual and psychosocial distress during a patient's treatment course are routinely addressed by physicians. Recent clinical studies that measure patient feedback and patient-reported outcomes have shown an added clinical benefit, empowering patients to participate in decision-making and allowing for earlier detection of symptom recurrence. It has been demonstrated that patients initiating chemotherapy who are trained to notify their healthcare teams with interval symptoms have a higher quality of life and improved overall survival compared with patients who receive usual care (5).

In comparison to patients who never participated in or only had minimal conversations about disease outcomes with their physicians, patients involved in treatment planning had higher illness understanding scores and better insight into the terminal nature of cancers. In addition, conveying information with compassion correlates with patients' satisfaction with care, as content presented in a more optimistic manner is often associated with higher levels of perceived physician expertise.

It is now common knowledge that systemic chemotherapy without a clear benefit for patients at the end-of-life results in excessively toxic outcomes.  Delayed referral to hospice and palliative care may not improve survival, but it may improve patient outcomes in terms of quality of life (6).  Given the proven value of palliative care in oncology for symptom management, quality of life, and prognostic understanding of terminal illnesses, there has been growing evidence in the last decade to support the early provision of palliative care for cancer patients in general, not just for lung cancer.

The median survival of patients randomized to early palliative care was 11.6 months, whereas the median survival of patients receiving standard oncologic care alone was 8.9 months (p  = 0.02). Patients assigned to early palliative care also received less aggressive cancer-directed care, including chemotherapy, at the end of life (7).  Thus, not only does palliative care prolong survival in some cases, but it also results in the removal of unnecessary treatment modalities that may increase management costs. While some may view referral to palliative care as an added expense, studies tend to prove otherwise, as the benefits far outweigh the increased initial cost of palliative care referral.

With the advent of Universal Health Care, and in conjunction with Republic Act 11036 or the Mental Health Act for providing mental health facilities in the community, palliative care must also be provided on a larger scale. The physical and psychosocial aspects of illness could be better addressed with early referral and management. It could mean the difference in terms of overall health outcomes.

REFERENCES

1.      Fitzmaurice C, Allen C, Barber RM, et al. Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life-years for 32 cancer groups, 1990 to 2015: a systematic analysis for the Global Burden of Disease Study. JAMA Oncol. 2016;388:1459–544.

2.      Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363:733–42.

3.      Lubitz JD, Riley GF. Trends in Medicare payments in the last year of life. N Engl J Med. 1993;328(15):1092–6.

4.      Huo J, Hong YR, Turner K, Bian J, Grewal R, Wilkie DJ. Utilization pattern and service settings of palliative care for patients with metastatic non-small cell lung cancer. Cancer. 2019;125(24):4481–9.

5.      Basch E, Deal A M, Kris M G et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2016;34(06):557–565.

CARETAKERS

I expect to pass through this world but once; any good thing therefore that I can do, or any kindness that I can show to any fellow-creature, let me do it now; let me not defer or neglect it, for I shall not pass this way again.

Stephen Grellet

As human beings with advanced knowledge, several vital tasks are incumbent upon us in order to take care of our planet. For example, we have to sustain each species that walks the earth and ensure that they continue to exist. While it is not given to everyone to go about being botanists and veterinarians, all of us, regardless of circumstances, are called to be caretakers. We have to take care of one another because losing a species could have serious ecological consequences. Biblically, we were all tasked with this function. And in a practical sense, only humans can really assume this responsibility.

The power to serve as a caretaker is a gift. Our intelligence and ability to become stewards not only rest in our ability to communicate. Our higher order skills – the ability to manipulate the environment – are seen in our upright posture (to see the horizon unlike other animals), our opposable thumb in our hands (to handle tools), and the larger brain in proportion to body size (to process information) may not be enough for us to protect ourselves, but they make us more creative in seizing opportunities. We may not be the strongest, fastest, or largest animals, but we certainly have the greatest capacity for adaptation and intellectual growth. Humans, to a certain extent, may be helpless in the face of certain calamities, but we can certainly predict them better and do something before or after these calamities occur.  We populated the earth because of wisdom, grit, and resilience.

As it has been our duty to care for all living creatures, there is even more impetus for us to take care of our own. Other animals have these same caring instincts. When someone gets sick or disabled, those who are capable will search for ways to find a cure. Parents protect their families from harm and facilitate growth and development. When parents age, the roles are reversed, but at times we forget that nature takes its toll. In our desire to heal and restore, we forget to care and look inwardly to meet our needs. This is where we must draw the line and enable reason to prevail.

Social beings have this need to be accepted and respected by peers. There is, unfortunately, no medal to be gained by letting nature take its course. This makes Hospice Care quite difficult to accept for such an intelligent organism tasked to be the caretaker of nature. It takes a special breed of people with enough experience to see through nature’s limitations and say where enough is enough. This does not equate with a lack of love or nurturing or an easy surrender. If immortality were to become the norm, there is no question that the practice of hospice care would become obsolete. If we had spare parts available to replace aging ones, the concept of surrender would be deemed taboo.  

There has been a great effort to find ways to keep our bodies running indefinitely. Science has made tremendous strides toward human research on artificial intelligence, artificial organs, transplant technologies, and anti-aging mechanisms. Our life expectancy is increasing, and the quality of life envisioned at the age of 60 has made retirement somewhat of a golden age. Add to that social media postings of 80-year-olds playing a good round of golf and attending to their grandchildren, and we see how the pressure mounts among us to keep our bodies alive. Extremes in life expectancies are not the norm and cannot be realized in all cases.

Individuals will continually search for ways to live longer. It is a noble endeavor. But more importantly, each must add meaning to those years by being stewards of health and well-being. We will only pass by once. Let us make the most out of it, no matter how long or short it may turn out to be.

THE IMPORTANCE OF PALLIATIVE CARE NURSING

"You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die." 

— Dame Cicely Saunders, nurse, physician and writer, and founder of the modern-day hospice movement 

A small percentage of persons with advanced disease die at home. However, one major limitation to carrying out this final wish is the lack of access to palliative care at home and the lack of nursing expertise to help patients during the final days.  Studies indicate that nurses play a substantial role in hospice and palliative care, but the perception of the public is that they are not capable.  Another issue is the reduced comfort level and negative attitude toward providing care for patients and their families at the end of life.  Studies identify a lack of end-of-life care knowledge and skills among both newly graduated and student nurses.  This is why providing nursing education is of paramount importance. 

The Ruth Foundation meets this need for upgrading the confidence of nurses in providing Hospice and Palliative Care by providing ELNEC* (End-of-Life Nursing Education Consortium)  locally. Included in the program is an Introduction to Palliative Nursing, Pain Management, Symptom Management, Communication, Ethical & Legal Issues, Cultural Considerations, Loss/Grief/Bereavement, and Final Hours. In addition, participants learn from role plays and case study reviews where they had opportunities to explore ways to improve self-care.

One of the most crucial aspects of palliative care for nurses is the ability to manage pain and other related symptoms in patients. Palliative nurses should be knowledgeable in identifying and assessing symptoms, as well as administering medications and other non-pharmacological interventions to alleviate discomfort.

Palliative nurses must be able to communicate effectively with patients and their families, as well as liaise with other healthcare professionals to ensure a coordinated approach to patient care. They should be skilled in providing support and counseling to patients and their families during end-of-life care.

A Palliative Care nurse should have a deep understanding and respect for cultural and spiritual beliefs, practices, and traditions. This is important as end-of-life choices can be influenced by cultural factors, and any misunderstandings can lead to distress for patients and their families.

Another essential aspect of end-of-life care involves care planning and coordination. Palliative care nurses should collaborate with other healthcare professionals and the patient’s family to develop personalized care plans to ensure the provision of high-quality care.

There are many ethical dilemmas in the course of palliative care nursing practice, especially surrounding issues of life-prolonging treatments and end-of-life decisions. Palliative nurses should have a strong grounding in ethical principles and should be able to apply them to clinical scenarios.

Lastly, Palliative Care nurses often encounter emotional and psychological challenges in their duties, which can leave them vulnerable to burnout and other negative outcomes. Self-care is critical to ensure that nurses remain emotionally resilient and competent in their roles.

The ELNEC curriculum has all the resources needed to empower palliative care nursing practitioners to take back to train others. There are also wonderful opportunities to network with others who are committed to improving care for all patients with life-limiting illnesses.

The most recent ELNEC Core held at The Medical City—South Luzon last April 28,2023.

 * The End-of-Life Nursing Education Consortium (ELNEC) Project is a national and international end-of-life/palliative care educational program administered by City of Hope (COH) designed to enhance palliative care in nursing. Materials are copyrighted by City of Hope and the American Association of Colleges of Nursing (AACN) and are used with permission.

REFERENCES:

Fischer S, Min SJ, Cervantes L, Kutner J. Where do you want to spend your last days of life? Low concordance between preferred and actual site of death among hospitalized adults. J Hosp Med 2013;8(4):178–183. 

American Association of Colleges of Nursing. End-of-Life Nursing Education Consortium (ELNEC) fact sheet 2016. American Association of Colleges of Nursing Website. 

Von Ah D, Cassara N. Perceptions of cultural competency of undergraduate nursing students. Open J Nurs 2013;3(2):182–185. 

THE PALLIATIVE CARE NETWORK (PCN): A MODEL FOR LOCAL HEALTH CARE

The multidisciplinary nature of Palliative and Hospice Care makes health care integration and local government support an important facet in improving the health of the people.

With the aim of providing health programs on primary health care, the City of Muntinlupa, in partnership with The Ruth Foundation for Hospice and Palliative Care (TRF), has created the Palliative Care Network (PCN). As approved by Muntinlupa City Mayor Rozzano Rufino “Ruffy” Biazon, PCN-Muntinlupa will be headed by its Chairperson, Dr. Juancho Bunyi (City Health Officer) with the participation of TRF CEO Dr. Rumalie Corvera, as one of its members.

PCN Muntinlupa will act as a sounding board for the provision of palliative care services in the city. Activities, programs, and training related to palliative care are expected to be put into place. It is also imperative that patient visits be conducted at home for those without the capability to travel to healthcare facilities.

To build a compassionate community rooted in scientific processes, PCN will also push for more evidence-based research on hospice and palliative care that will be published in peer-reviewed journals. The referral system is also going to be streamlined to create a more viable network for care provision and to lessen the stress of caregivers and families when trying to access care for their relatives with chronic illnesses. This will also be lined up with the comprehensive benefits package for Palliative Care in the Philippine Health Insurance Corporation.

The outcomes that can be expected from this network are immeasurable. It may not produce income, but it will create a more productive workforce that can focus on its economic needs instead of worrying about where to bring a relative who needs palliative care. A compassionate community encourages more empathy among its constituents, rekindling the “bayanihan” spirit of the Filipino where neighbors and friends help out in whatever capacity when someone is in need. Government officials would find more purpose in their activities, seeing that they make a difference in the lives of their constituents through hospice care. Businesses would create more socially relevant projects for palliative care and contribute their resources to generate goodwill. Religious leaders would find in hospice and palliative care a way to live out their teachings and provide counselling and support for those in distress.

In due time, PCN hopes that it can create a template that can be duplicated in other cities and municipalities. The Universal Health Care Law aims to provide Filipinos access to quality and cost-effective care. With proper planning, resource allocation, sound leadership, and determination to succeed, even those without the means to afford medical services can be given a life filled with dignity and hope. Local governments would also be able to instill a culture that is rooted on healthy lifestyles, disease prevention, and scientific management of disease and illness.

We would like to congratulate the City of Muntinlupa and The Ruth Foundation for its participation in this network. It is part of every individual’s vision to live a life that cultivates care and compassion. In the end, it is what makes us human. No amount of success and wealth can ever compensate for neglect at home and in the community we live in. Every man or woman is meant to look after each other in times of need.