Note by the compiler of Short Notes in Plastic Surgery
While on a vacation in Visakhapatnam I happened to meet Dr. Vidya Viswanath, a pathologist, who is now devoted full time to the practice of palliative medicine. I had thought till then that palliative medicine was restricted to the terminally ill but learnt from her for the first time the larger scope of palliative medicine and its application across all branches of medicine and surgery for various clinical situations. What was equally fascinating was the transition of this intrepid pathologist from transfusion medicine to palliative care. I therefore requested her to write on the subject of Palliative Medicine for this blog which she has now done but in addition also requested her to write her story as well as that of the institution where she works. As an exception for the first time in this blog those two stories precede the actual scientific chapter.
Ravin Thatte
I passed my post-graduate examination in pathology from the Lokmanya Tilak Municipal Medical College in Sion, Mumbai (formerly Bombay) in 1993. Neither I nor my husband Viswanath, who is a gastroenterologist, had known any city other than Mumbai (in earlier days Bombay). But Viswanath got a job in Vishakhapatnam and we thus travelled to Vishakhapatnam to start our life in an unfamiliar city, a move which has been a truly happy and gratifying decision. This “City of Destiny” has made us what we are. As the Geeta says, “Mysterious are the ways of Karm.” (कर्मणा गहनो गति: )
I was truly disappointed in those early days that I could not work at Tata Memorial Centre in Mumbai because I had to leave Mumbai but did go back there as an observer for a month in 1993. As I was ruing the fact that I could not find a position in the government medical college and hospital in Visakhapatnam, a window opened for a possible career in transfusion medicine which was really only the beginning of the specialty in the combined states of Andhra Pradesh and Telangana back then in 1995. Right from writing the Standard Operating Protocols, I was part of this first Non-governmental Organisation (NGO) funded blood bank, called the A.S. Raja Voluntary Blood Bank, in Visakhapatnam. This blood bank was started as a service project for the city of Visakhapatnam by A.S. Raja, who was a renowned industrialist. His daughter-in-law, Dr. A. Sugandhi, a pathologist from Madurai and son, Dr. A.V. Sivaprasad, a gastroenterologist from AIIMS, Delhi, were instrumental in taking forward A.S. Raja’s dream project because it was the need of the hour in the State. They have remained friends for life and possibly the reason we survived those initial years in Visakhapatnam! This was my first foray into social medicine and the experience was incredibly gratifying and involved among other things, setting up systems to conducting blood donation camps to training doctors and technicians and working as a team. This is when I saw the travails of serious health related suffering and the crippling effects of chronic diseases. Meeting the caregivers of patients with chronic kidney disease on regular dialysis and needing transfusions, grieving with caregivers of patients with cancer who also needed regular transfusions opened my eyes to a world of suffering to which I was oblivious. We also then created a registry of children with thalassemia and sickle cell anemia to enable them to receive their transfusions seamlessly. In the decade that followed, that blood bank grew into one of the largest voluntary blood banks in the State of Andhra Pradesh. As I counselled donors who tested positive for viral markers, I often wondered about the care that patients with chronic illness were receiving. This was also the period when I got the opportunity to teach Pathology part time in the local dental college. Robbins Textbook of Pathology was now in its 8th edition and I enjoyed the digital library as much as I enjoyed training and educating the young undergraduates. This is when and where I stumbled upon palliative medicine and enrolled for my first National Fellowship in Palliative Medicine (NFPM) at Institute of Palliative Medicine, Calicut in 2012.The first hospice in Visakhapatnam through the Age Care Foundation was started in 2012 too and here I had a colleague in the specialty who had also just started training at Pallium India in Trivandrum. In 2014, I completed another course in Palliative Medicine at Tata Memorial Hospital, Mumbai. I realized that this was my calling and transitioned completely into Palliative Medicine when Tata Memorial Centre decided to start a unit at Visakhapatnam in June 2014. I joined the hospital in February 2015 to set up the department and enrolled for the MSc in Palliative Medicine on a Commonwealth Scholarship at the School of Medicine, Cardiff University (2015-2018). This was a distance learning program which also gave us the opportunity to travel twice to the UK for experiential learning. This was really intense alongside work, but a wonderful opportunity to learn from some of the best global faculty and cement my training in palliative medicine. I continue to be an Honorary Lecturer at Cardiff University. Looking back over the years, to have started my journey in palliative care, hoping to volunteer for a mere 15 days a year to working full time in palliative care astonishes me. But then, the Universe always guides us and, in this space, I find fulfillment!
I am immensely grateful to Dr. A. Sugandhi, the founder of A.S. Raja Voluntary Blood Bank, with whom my foray into social medicine began and both the Directors of HBCHRC, Visakhapatnam, the founder and our present Directors; Dr. Digumarti Raghunadharao and Dr. Umesh Mahantshetty for establishing and nurturing the department of Palliative Medicine as a key human tenet in cancer care. I remain indebted to my patients and caregivers for the privilege of being able to offer palliative care. And my special gratitude to the wonderful fraternity in palliative medicine and my colleagues at work who make every morning something to look forward to!
Vidya Viswanath,
MD Pathology University of Mumbai
MSc Palliative Medicine School of Medicine, Cardiff University
Associate Professor, Department of Palliative Medicine,
Homi Bhabha Cancer Hospital and Research Centre, Visakhapatnam
Honorary Lecturer, School of Medicine, Cardiff University
ABOUT THE INSTITUTE
“Making Compassion Contagious” has been the motto of the department of Palliative Medicine at Homi Bhabha Cancer Hospital and Research Centre HBCHRC, Visakhapatnam, since its inception in February 2015. The story of this department runs alongside the establishment of the hospital, HBCHRC, Visakhapatnam which was set up as a unit of Tata Memorial Centre, Mumbai, under the Department of Atomic Energy in June 2014. The beginnings of the hospital were in containers in a 70-acre piece of land (see below left and right) amidst idyllic surroundings in the outskirts of Visakhapatnam city at Aganampudi village.
The first departments to be established were Medical Oncology, Gynecologic oncology and Preventive Oncology Services and Palliative Care along with Day Care Chemotherapy and basic lab services. The departments of Surgical oncology and Radiation oncology followed over the next few years, and all the services moved into the fully constructed hospital buildings by 2020.
Provision of dedicated palliative care services right from the inception of the hospital set the tone for integrated palliative care services where patients benefited with timely palliative care – early, concurrent and end of life care. Non-abandonment of the patient and continuity of care was always prioritized. Though the resources and staffing were limited, the interdisciplinary relationships thrived and all the residents and faculty who rotated at the hospital used the opportunity to sensitize themselves in the basics of palliative care. The department, as it stands today, has a footfall of over 8000 patients annually and is a European Society for Medical Oncology (ESMO) Designated Centre of Integrated Oncology and Palliative Care. It provides Outpatient, Inpatient, telephonic and home – Care services for patients with palliative care needs and is supported by the Cipla Foundation through the Integrated Hospital based Continuity of Care IHCC Project.
PALLIATIVE CARE
1. Integrating Palliative Care with all aspects of healthcare – Why should one care?
Caring for patients with life limiting illnesses and Serious Health-related Suffering (SHS) is a fundamental obligation of the medical profession even as advancements in medical science continue rapidly and frenetically because of a simple reason; we are mortal! This is how the speciality of palliative care emerged; due to the inadequacies observed in care provision as medicine advanced.
The practice of palliative care affirms certain essential and vulnerable dimensions in the practice of medicine and holistic care for the patient AND their families. It provides holistic care to patients with chronic life limiting illnesses and ensures non-abandonment. It prioritises the values, needs and goals of patients and their families and facilitates shared decision-making during care planning. The settings for palliative care provision can be diverse from homes to the Intensive Care Units. In spite of this, it still remains shrouded in myth and misconceptions perpetuated by inadequate education and exposure in the undergraduate and post graduate levels.
Palliative Care, as defined by the World Health Organization (WHO) in 2002, is an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
The definition clarifies the misconceptions associated with palliative care
a. Is palliative care just terminal care?
b. Is it associated with only cancer?
Though cancer could be acknowledged as a catalyst for palliative care, the definition clearly refers to early involvement in life threatening illnesses – both cancer and non-cancer.
c. “There is nothing more we can do. Please take the patient home”
This is a refrain one would never want for oneself. The underlying principle in the practice of Palliative care is Non abandonment and Continuity of Care. It empowers an interdisciplinary team of healthcare providers to focus on what can be done to alleviate suffering and support the patient and family caregiver till the patient lives and through bereavement.
It acknowledges the illness experience and encompasses whole-person care across the bio-psycho-socio-spiritual domains. The standard of care is to treat symptoms proportionately, the discipline neither hastens nor prolongs death.
It addresses ‘Total Pain’ as conceptualised by Dame Cicely Saunders and reiterates her teaching that constant pain needs constant medication. Total pain is understood as the experience of pain and suffering through the subjective lens of the life circumstances of the index patient – encompassing within its fold all aspects of their lives as they traverse this journey, irrespective of outcomes.
We exist in a context where the illness of one person in one generation, has multi-generational impact. And often, the most vulnerable are ground down between the unstoppable force of technocratic, impoverishing and often futile medical interventions, and the immovable rock of natural biology.
In 2017, the report published by the Lancet Commission on Global Access to Palliative Care and Pain Relief exposed for the first time that over 68 million experience serious health-related suffering (SHS) globally, 80% of whom were in Low and Middle-Income Countries (LMICs). 9.9 Million of them in South Asia. We also know that the cancer mortality in the region is significantly higher than the world average.
The need for palliative care is greater in LMICs because disease-specific treatment does not reach patients adequately or in time. Consequently, palliative care casts a wider net in these countries, going beyond symptom control, end of life care or specific disease groups.
While we follow the same definition of palliative care as outlined by the WHO, in our context, the phrase “life-threatening” is to be used keeping in mind life in the broader sense of the term and not just existence.
This means that we include many “life-limiting” conditions like spinal cord trauma, disability, disfiguration because of disease or trauma, and congenital anomalies that we believe threaten life by limiting it to within 4 walls.
In the West, there is a parallel care system that takes care of people with such conditions, and provides support both in institutional and home settings. Such systems are often not accessible to those who need it in our settings. We bring them into the fold of Palliative Care.
Palliative care in India and other Global South countries is not just a medical intervention. It is a social intervention.
Unfortunately, for countries like ours, the vast majority do not even have access to palliative care. In India less than 4% of the population have access, and that is with the entire palliative care community working at full stretch. To merely say that ensuring palliative care is not the whole answer. Capacity building, enabling policy, legislation and access to medicines are all equally important.
2. Modalities and Models of Palliative Care – How does one provide palliative care?
Palliative care being holistic care has a multidimensional approach with assessment and management focusing on the key domains including the physical, psychological, social and spiritual. Continuous symptom management along the trajectory of chronic illness is a key element of care
- Pain is one of the most important symptoms dealt with in palliative care. Constant pain, as in chronic disease, needs continuous management and the key to good pain management is impeccable assessment. In a disease like cancer, the cause of pain can be multifactorial and dynamic along the trajectory of the disease. Fig A, Fig B.
Pain is what the patient says hurts (Robert Twycross). The management of Total Pain as described by Dame Cicely Saunders in palliative care needs a multidimensional approach. Hence management includes the physical control of pain using the WHO step ladder. Analgesics include the opioids and non-opioids and adjuvants along with non-pharmacological approaches. Addressing the person with pain is important and hence psychosocial support through counselling and practical interventions for logistic and financial support are part of the management plan.
- Difficult symptoms
Besides pain, difficult symptoms in palliative care include the management of dyspnoea, bowel obstruction, nausea, vomiting, constipation, fatigue, bleeding, wound and fistula management, odour management among many others.
- Approach to Symptom Management
This follows the EEEMA approach. This includes Evaluation, Explanation, Management, Monitoring (Review and Re Review), Attention to detail. This helps in individualising treatment and fine-tuning management.
Symptom management in palliative care focuses on longitudinal and regular assessment which includes the use of tools. The tools are used for screening symptoms, for specific symptom assessments both in the physical and psychological domain, for prognostication and for patient related outcomes. This documentation follows the story of the patient along the illness trajectory and enables effective management.
- The Illness Experience: How does one treat the person with the disease?
The Illness experience is unique for every person with disease and hence managing the core domain of addressing spiritual suffering is one of the most important areas in the management of chronic disease. Patients and families struggle with various emotions along the treatment trajectory and the palliative care provider becomes the fellow traveller in the journey, navigating transitions in the care pathway. Addressing patient and caregiver distress with equanimity, empathy and honesty is challenging. The ethical dilemmas are real, and one needs to train to develop the knowledge, attitude and skill to address serious health related suffering.
To facilitate assessment and management, to build trust, to enable cyclical conversations, to increase prognostic awareness and facilitate a comprehensive care plan, the core requisite is training in serious health related communication. All of this enables shared decision making with patients and families, thus facilitating Advance Care planning and good end of life care.
- Palliative Care Provision – Who constitutes the Team?
To enable care in all dimensions, palliative care services include a multidisciplinary team to optimise care. This includes the trained doctor, nurse, psychologist, social worker, physical therapist and volunteers.
Counselling plays a vital role in supporting both patients and caregivers by providing emotional support, promoting coping skills, facilitating communication, navigating crisis and ultimately enhancing their well-being and improving the caregiving experience.
Counselling is not restricted to just promoting emotional well-being, but also assists in enabling families to actively participate in determining goals of care through careful consideration of treatment plans on quality of life. Unlike the usual paternalistic model, shared decision-making pathways in palliative care place importance on the values and preferences of the patient. It also seeks to mitigate the prevalent problem of financial toxicity due to catastrophic out of pocket expenditure for healthcare.
Out-of-pocket (OOP) health expenses drove 55 million Indians–more than the population of South Korea, Spain or Kenya–into poverty in 2011-12, and of these, 38 million (69%) were impoverished by expenditure on medicines alone, according to a study published in the BMJ in May 2018.
- The Importance of Integrating Palliative Care: How can we do it ?
In addition to interdisciplinary coordination, palliative care needs to integrate meaningfully and seamlessly with the primary speciality; be it oncology, nephrology, neurology, cardiology, respiratory medicine, paediatrics or geriatrics. Palliative care cannot start at end of life, it has to be integrated early in chronic disease and continued concurrently to facilitate dignified end of life care.
Thus palliative care services can be co located in the outpatient clinic, follow a consultative model in the inpatient wards, can be integrated in the Intensive care units and carried into the communities through Home Care. Hospices are in patient services that can provide respite care, end of life care and offer support to patients and families in their most vulnerable and difficult times. Thus, it is the philosophy of palliative care that is paramount; it can be integrated in any place of care, when needed.
At the same time, given the rise of Non Communicable diseases and our increasing geriatric population, it is unrealistic to imagine that palliative care services would be available from homes to ICUs. Thus basic training in the principles of palliative care should be included in the undergraduate curriculum. All post graduates should train in the basics of palliative care, thus ensuring that primary and generalist palliative care services could be available everywhere. Specialist palliative care departments in institutions can coordinate service, education, training and research to help penetrate the services in our country.
3. The Role of palliative care in the care for burn victims and plastic surgery:
Palliative care plays a crucial role in burns and plastic surgery, focusing on improving the quality of life for patients who are dealing with severe burns, extensive reconstructive surgeries, or long-term recovery. While plastic surgery focuses on the restoration of appearance and function, palliative care aims to address the overall well-being of the patient, both physically and emotionally.
Here’s how palliative care supports burns and plastic surgery patients:
Pain Management
- Burns: Severe burn injuries often cause excruciating pain due to nerve damage and tissue injury. Palliative care specialists collaborate with the surgical and pain management teams to provide effective and individualized pain relief strategies. This includes the use of analgesics, nerve blocks, and alternative therapies like acupuncture or guided relaxation techniques.
- Plastic Surgery: Patients undergoing extensive reconstructive surgery can experience significant postoperative pain, especially when recovery involves complex wound care or grafts. Palliative care professionals help manage pain in a way that promotes healing while minimizing side effects from medications.
Psychosocial and Emotional Support
- Burns: Severe burns often result in long-term psychological challenges, including anxiety, depression, post-traumatic stress disorder (PTSD), and body image issues. Palliative care teams provide psychological support and counselling, helping patients navigate the trauma of burns and the emotional burden of long-term recovery.
- Plastic Surgery: For patients undergoing reconstructive surgery (e.g., after trauma, cancer, or congenital defects), the emotional adjustment can be intense. Palliative care provides support to help patients cope with changes in their appearance, the emotional stress of recovery, and the adjustment to life after surgery.
Multidisciplinary Coordination
- Burn patients often require care from various specialists: surgeons, physical therapists, nutritionists, psychologists, etc. Palliative care teams work as part of this multidisciplinary team, ensuring that all aspects of the patient’s care are well-coordinated. This improves outcomes and ensures that the patient’s overall needs (not just medical or surgical) are being met.
- This coordination is particularly important for burn patients, who may require long-term rehabilitation, wound care, and support for scars, contractures, and functional limitations. Plastic surgery may address the physical aspect, but palliative care helps patients address emotional, psychological, and social aspects.
Management of Chronic Symptoms
- Burns: Many burn patients experience chronic pain or other long-term symptoms, such as nerve damage, contractures (tightening of skin or muscles), or pruritus (severe itching). Palliative care helps to manage these symptoms, which can persist long after the acute burn injury has healed. Interventions may include pharmacologic treatments, physical therapy, or even psychotherapy for conditions like phantom pain.
- Plastic Surgery: In some cases, reconstructive surgeries may not fully restore function or appearance, and the patient may continue to experience residual discomfort, scarring, or functional limitations. Palliative care is focused on managing these chronic issues to improve quality of life, often through interdisciplinary care teams.
End-of-Life Care (When Necessary)
- Burns: In cases of severe burns where survival is unlikely or recovery is not feasible due to the extent of injuries, palliative care shifts toward end-of-life care. This can involve addressing pain, distress, and ensuring comfort for the patient as they near the end of their life.
- Plastic Surgery: For patients with terminal conditions (e.g., metastatic cancer or complex trauma) who may undergo reconstructive surgery to improve their quality of life during their final months, palliative care provides support to ensure comfort and dignity throughout the process.
Family and Caregiver Support
- Palliative care teams also provide support for the patient’s family and caregivers, who are often deeply involved in the care of burn or reconstructive surgery patients. Burn injuries can cause lasting trauma, and caregivers need education and emotional support to cope with their loved one’s condition.
- Plastic surgery recovery, especially in the case of disfigurement, can also be emotionally taxing for families. Palliative care can help them manage the stress, guilt, or grief they may experience.
Facilitating Decision-Making
- Palliative care specialists help patients and families navigate complex decisions around treatment options. For instance, when the patient faces multiple surgeries or invasive treatments, the palliative care team provides guidance on the potential risks and benefits, ensuring that patients are informed and their values are respected in the decision-making process.
Advanced Wound Care
- For burn patients, managing extensive and painful wounds is a central part of recovery. Palliative care can contribute to this by offering specialized expertise in managing wounds, helping with the use of dressings, preventing infection, and minimizing the impact of scarring.
- In the context of plastic surgery, wounds from reconstructive procedures can be long-healing and require specialized care to ensure optimal outcomes. Palliative care can assist with complex wound management to ensure better healing and comfort.
4. Access to Pain Relief – What are the barriers?
While it’s not easy to measure the depth and breadth of service requirement, the internationally accepted proxy indicator of a country’s palliative care provision is the average morphine equivalence consumption.
The UN Drug Conventions place on all member states the dual obligation of two core imperatives – to prevent the non-medical use of controlled substances, and equally, to ensure adequate availability of controlled substances for medical and scientific purposes. Historical misalignment between these two core imperatives has produced two opioid crises – one of access and “the global pandemic of untreated pain,” and the other a more regionally defined epidemic of opioid use disorder and fatal overdose.
The fact remains that the balance is precariously tipped to one side – and the system is still effectively built around control, not access.
This map based on data shared by the International Narcotics Control Board, became the signature of the 2017 Lancet Commission report. It illustrates the disparity in access to opioid analgesics in different parts of the world, and the estimated percentages of the needs met. 90% of the morphine for pain relief is consumed by 10% of the world’s richest countries.
Major barriers continue to exist. Not least amongst them is the lack of training of medical professionals in the safe and effective use of opioids for pain relief. Misconceptions around the safe use of oral morphine abound, but we are yet to see any comprehensive campaign to correct the misinformation.
And then there is the unjustifiable barrier cause by tedious, complex and unrealistic amounts of paperwork that make it near impossible for practitioners to effectively incorporate the use of opioid analgesics into their practice.
The ‘Cartography of Pain’ and the ‘Access Abyss’ are not just issues for palliative care advocates. They are global public health issues.
Links to the IAPC and Pallium India Newsletters
https://www.palliativecare.in/category/newsletter/
https://palliumindia.org/category/newsletter
Dr. Vidya Viswanath
Short Notes in Plastic Surgery 