Sukham Blog – A monthly column focused on South Asian health and wellbeing.
My wife’s oncologist recommended a palliative-care consultation during one of her checkups. This was the first time we heard about it and my wife, subsequently, received beneficial palliative care alongside her ongoing treatment for cancer. Since then, I’ve continued to learn more about palliative care and how it helps patients living with various kinds of serious illnesses. I’ve also realized that most people know very little, or are misinformed about palliative care. We need to understand this relatively new medical specialty; it can do a lot for us and our loved ones in the event of a serious health issue.
Palliative care is specialized care for people living with a serious illness. It is a type of care focused on providing relief from the symptoms and stress of different kinds of serious and chronic, progressive illnesses, and is provided in addition to, and concurrent with, ongoing medical care. It supports the patient’s ability to feel better while undergoing treatments which could be intense and sometimes not well tolerated. The goal of palliative care is to improve quality of life for both the patient and the family.
To palliate is to make something – for example, a disease or its symptoms – less severe or unpleasant. Palliative Medicine is relatively new. It has its roots in the work of Cecily Saunders and Elisabeth Kübler-Ross in the 1960s. The term Palliative Care was coined in 1974 by Dr. Balfour Mount, a surgical oncologist at The Royal Victoria Hospital in Montreal, Canada. It was recognized as a field of specialty medicine in Great Britain in 1987, the same year that Cleveland Clinic started the first Palliative Medicine service in the United States. It became a board-certified subspecialty of medicine in the United States in 2006, just 15 years ago.
Let me repeat: Palliative care is specialized care for someone living with a serious or chronic progressive illness, focused on providing relief from the symptoms and stress of the illness, to improve quality of life for both the patient and the family. It is based on the needs of each individual patient and can be provided at any time during his or her illness, along with the treatment he or she is already receiving, regardless of the prognosis, expected trajectory of the disease, or age of the patient.
What, specifically, does palliative care do? It provides relief from pain, nausea, constipation, neuropathy, shortness of breath, or other side effects and symptoms caused by the illness and/or treatment. It helps when patients and their families have trouble coping with the illness and are anxious, depressed, stressed, or fatigued, and enables them to better carry out their daily tasks and do the things they want. Palliative care can also improve the quality of life for both the patient and his or her family.
What is meant by quality of life? That depends on the patient! He or she defines what is important at that moment and in the future. The palliative care team works with the patient and his or her family to understand what’s important and what matters most to them, and takes that into account to formulate a treatment plan and provide the best possible support to help realize those goals.
I used the phrase palliative-care team. Care is provided by a specially-trained, multidisciplinary team that typically includes doctors, nurses, medical assistants, social workers, chaplains, and other specialists. This is because palliative care extends beyond a patient’s physiological and medical needs and addresses other factors that may be affecting their quality of life, including psychological, spiritual, and social needs. These needs vary from patient to patient. In addition, they can vary over time for a given patient.
Needs could include: help with figuring out what medications should be taken and when; thinking things through, and weighing options when faced with decisions on a suggested next step in treatment; help navigating the complexity of a large hospital when referred to different specialists or when various tests are ordered. Sometimes stress can overwhelm the patient, caregiver, or another family member, and they could benefit from having a caring listener, or just a hand to hold for a while. The costs of treatment are a huge concern for many of us, so the assistance of a qualified individual to sort through financial questions might be valuable. When serious illness brings up existential and spiritual questions, trained chaplains could provide answers, solace, comfort, and a compassionate presence. Nutritionists who understand the patient’s diagnosis and condition can help address dietary concerns.
Palliative-care specialists treat people living with many types of serious and chronic illnesses, regardless of their age, stage of the disease, and whether or not they are still receiving curative treatment; these include cancer, congestive heart failure, chronic obstructive pulmonary disease (COPD), kidney failure, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS), and other life-limiting diseases. Pediatric palliative care is an upcoming specialty. During the current pandemic, it’s an essential part of treatment for those who have contracted COVID-19.
Many confuse palliative care with hospice and believe a recommendation for palliative care implies the patient has a condition that will imminently end his or her life. This is not correct. Palliative care can be very useful for those managing a long-term illness. Quality research provides evidence that the early introduction of palliative care provides all the benefits described above, and results in fewer hospitalizations, a reduced burden on the family, and greater satisfaction overall. Hospice is a form of palliative care for those patients judged to be approaching end of life – and typically have six months or less left to live – who decide to focus on comfort instead of prolonging treatments.
I hope this has helped you better understand Palliative Care and dispel any related misconceptions.
Mukund Acharya is a regular columnist for India Currents. He is also President and a co-founder ofSukham,an all-volunteer non-profit organization in the Bay Area that advocates for healthy aging within the South Asian community. Sukham provides curated information and resources on health and well-being, aging, and life’s transitions, including serious illness, palliative and hospice care, death, and bereavement. Contact the author at [email protected]
Sincere thanks to Drs. Neelu Mehra at Kaiser Permanente, and Kavitha Ramchandran & Grant Smith at Stanford Health Care – Palliative Care Physicians who have contributed greatly to my understanding of Palliative Care.
With sincere thanks to Trung Nguyen at Pexels for the use of her beautiful photograph.
“I’m sorry to inform you your child’s psychological age is at 9 months … ,” Laxmi and Narendran were numbed by these words even as the child psychologist talked on about expressive vs. receptive verbal skills and cognitive abilities; or in their son’s case, disabilities. As their mind tried to grapple with the words, Ravi, their almost 4-year-old, held up his toy car and rotated its wheels, over and over again. Drowning in a feeling of doom and darkness, Laxmi heard herself ask “What can we do to … to …” She remembers that she did not even know how to complete the sentence. All she could hear is the roar of sheer terror for her child and for their family; the pain of dreams aborted and a feeling of wretchedness setting in.
Thus begins the official journey of every family whose child gets diagnosed as being “autistic” at 18 months, two, three, or even five years. Autism is a neurological disorder that sets in within the first three years of life and impacts normal brain development in the areas of social interaction and communication skills.
Autism is approaching the numbers of an epidemic. The figures are staggering—in the 1960s, four in 10,000 children had autism. Today, according to Autism Speaks, an organization dedicated to facilitating global research into the causes, treatments and an eventual cure for autism, one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. U.S. government statistics suggest the prevalence rate of autism is increasing 10-17% annually. The website, Talk About Curing Autism (TACA) states that eight new cases are reported each day in California alone.
And autism is by no means an “American thing,” as disbelieving desi grandparents of autistic children will claim. The Autism Speaks website states that about 1.7 million individuals are autistic in India. A CNN article in early 2008 reported that autism is affecting one in 58 individuals in England and Ireland.
So, what is going on? Is it just the modern over-emphasis on labeling? The causes of autism are still hotly debated among scientific and familial circles. What has been proven is that there is no commonality of cause among the children affected (it is not necessarily genetic), though there are many theories—some reports claim environmental pollution such as chemical dumping into the water table as a factor. Some parents believe that indiscriminate use of vaccines is to blame. “Shilpa was a vivacious child, babbling and making gestures all the time. A week after her 12-month shot, she was a withdrawn child. She regressed completely after that—now, she cannot even say bye bye,” grieves mother Sneha, a part-time accountant in East Bay Area. (Studies refute the vaccine theory.) Some say it is a harbinger of societal evolution; joint families disintegrating to nuclear families to eventually self-sufficient individual worlds where human “social” contact is made via machines (computers). Yet another theory is that some unpredictable connections remain incomplete within the child’s brain in the early developmental years, which could explain why the symptoms span a wide range, the official diagnosis being “Autism Spectrum Disorder.”
The neurobiological incompleteness does however manifest in some classical symptoms, and tests are based on there being consistent evidence of a few. For example, showing no cognizance of one’s own name and not seeking human contact are two symptoms mandatory for a diagnosis.
Autistic means “into one’s own self.” Autistic individuals are not just introverted; they seem to exist in a world of their own. They usually do not respond to hugs; typically do not coo back to baby-talk, and rarely show emotions. Some children indulge in repeated head banging or spinning—walking in circles—continuously. Some will wander off on their own. Most have issues with food—some eat indiscriminately, even dirt; others will eat only pureed food, even at four years. “Krish would stay silent for eight hours straight at his daycare. At first we thought he was just an extremely shy child, but he never imitated actions, repeated new words, or played with other kids. He would stare at nothing for an hour at times … I had been a mother for two years, and I had never heard him say Mamma,” recalls Priti, a mother in Cupertino. Krish was eventually diagnosed as being autistic, his expressive language skills leveled at seven months.
What can be done? Interestingly, in the case of autism, a lot can be done and has been done. Autism cannot be cured, but in a significant number of cases, if diagnosed in the first three years of life, a number of therapies can be put in place to eventually get the child to be a fully functioning, participative member of society.
The remarkable thing about autism and the age of science we live in is that the neurobiological incompleteness can be completed. An autistic child that does not realize that he needs to take his finger away from the scalding surface can be taught to do so. While he may still prefer being by himself, he can be made to feel some joy in being with others a part of the time. He can be taught to not wander away, to explain in advance that he does not like songs instead of screaming; can be taught that when it’s cold outside, he needs to wear a jacket.
Given the right therapies in the right amounts, a significant number of children with these special needs can mainstream—meaning leading independent, productive lives as a part of society. Early intervention support has been put in place by state governments, where an evaluation and ensuing therapy is free up to three years of age. The public school system takes financial responsibility of the child’s education thereafter, via IEPs (Individualized Educational Plans).
However, given the rise in autism and the downturn impacting government funding negatively, parents are facing increased resistance to their requests for better facilities in special classrooms and curriculum that keeps pace with the child’s progress.
To exacerbate the situation, the quality-of-life needs of a child are not taken into account by the school; just the educational needs. A child may be taught the alphabet, but not how to respond to “How are you doing today?” Generally speaking, a classroom or interaction with a stranger/ peer overloads the senses of an autistic child, resulting in “behavior issues”—examples being tuning off, spinning, screaming, or repeated head-banging. Parents of children with special needs have to pay out-of-pocket for empowering their child with strategies to cope. These therapies can be categorized as speech, occupational, behavioral and physiological.
At the forefront of not just sponsoring these therapies but also imparting them, are the special parents of these special kids. “It took us a year to get Suraj to say ‘banana.’ I would get him, through tears and tantrums, to try to say the word first, before actually giving it to him. It broke my heart everyday, he loves to eat them so much, but I had to stay firm,” says Shailaja, an ex-marketing professional. Shailaja’s mode of parenting is typical of autistic therapies, which coax the people around an autistic child into a pattern of intensive modeling and tough love.
Another example of parents unlearning their intuitive persona to don the special-parent avatar is in the occupational area. Swati Shah, founder of Ascend Rehab, an occupational therapy clinic based in San Ramon says, “Most of the kids who come to me have issues with what is called sensory integration—a hyper or hypo-sensitivity to textures, sounds and motion; and poor hand-eye and limb coordination.” Some children are easily and uncontrollably excitable, so parents learn to ask them to use “quiet hands and voice” and get them to wear weighted jackets—literally, jackets with weights in them—to calm them down, like when a heavy blanket is recommended for a baby to help her sleep better.
Applied Behavioral Analysis (ABA) therapy has been the bulwark therapy for most families. Children with autism display a spectrum of behavioral challenges, and ABA works on customizing the program for each child. One child may need help in making eye contact; another might need help in playing with peers.
Kevin Dotts, founder of I Can Too, a leading provider of ABA therapy in California shares, “Every autistic child is unique, just like typically developing kids. Having the same diagnostic label does not make them homogenous.”
ABA therapists typically work in teams of 2-6 with a child on a daily basis and usually meet monthly with the parents to assess progress and re-strategize as needed, the credo being, “If a child cannot learn in the way we teach, we must teach in a way the child can learn.”
A typical program consists of repeated instruction, modeling and rewards for each child, along with a huge dose of love and patience. “I have seen several kids gradually gain confidence, learn to coordinate their behavior and bodies, and come into their own.” says Kavita Singal, an ABA therapist in San Jose.
Some parents prefer literally getting under the skin with autism. Tripti, mother of Shekhar—a five-year-old who was diagnosed with autism at two, found that following a wheat- and casein(milk protein)-free diet helped her son to be calmer. The reasoning gaining increasing acceptance among parents is that some autistic children cannot absorb certain foods well, leading to a kind of toxicity in their bodies which in turn affects the neurobiology— “you are what you eat.” Homeopathy and Ayurveda are also being adopted by parents to improve quality of life for their kids.
All of these additional therapies are typically imparted 15-25 hours a week, and it can take anywhere from two to 15 years for the modeled behavior to be fully ingrained as intuitive behavior.
An added challenge with autism is that even ingrained behaviors can be forgotten, so consistent, long-term therapy is a must. The financial burden on families ranges $2,000-$5,000 a month. One parent often has to give up his or her job in order to tend to the child, adding to the financial strain.
Considering that autism is a medical condition, one would think insurance companies would cover the costs. Not so in California which, unlike some other states, does not mandate coverage for autism therapies. Most insurance companies deny coverage, ironically, on account of the therapies not being “medically necessary;” meaning that no medicines are required, so they cannot be held responsible. Most families are forced to engage in a battle of paperwork and lawsuits to get coverage. A common tactic adopted by the insurance companies is to delay start of coverage for several months, and then capping the costs or forcing several re-evaluations frequently. Sadly, coping with a special child, therapies, and third parties involved is a full-time job, and that’s excluding the emotional drain.
This is a battle fought by parents haunted by the fear that their child will either abandon society or worse, be shunned by society. “Even with the therapies in place, I’m haunted by the possibility that the worst might not be behind us,” says Meera, afraid that Akash, her five-year-old, will never learn how to be with others. It is inevitable that autism will touch all our lives; if a child we know isn’t already affected, one in our neighborhood definitely is, given the figures.
As a society, we must learn to recognize and assist the Meeras of our world. If it takes a village to raise a child, it takes an accepting society to raise a child with autism.
(Names changed to protect privacy.)
Priya is actively involved in special education issues and autism therapies.
Early Warning Signs of Autism
• Does not coo or smile by six months old
• Has trouble sitting, standing up, or reaching for objects by age one
• Does not say simple words like “mama” or “dada” by age one
• Does not turn his or her head to follow sounds or voices
• Does not react to loud noises
• Repeats certain behaviors, including some that are harmful, like banging his or her head
• Makes little or no eye contact and wants to be alone
• Does not play games like peek-a-boo or “pretend”
• Any loss of speech or social skills
Source: First 5 of California
Autism Etiquette: What to do if you meet a family with an autistic child
• Never ignore or pretend the child doesn’t exist. This makes the child and family very uncomfortable. Acknowledge the elephant in the room.
• If you can start with a look straight in the eye and a smile on your face, you would have already built a big bridge to reach out to a child who could really use a friend. This communicates: I care and you are OK just the way you are.
• If you see a child having a difficult time, don’t assume the parent is negligent and throw disapproving looks. My child is acutely sensitive to the piercing glances of strangers even when he is in the middle of a meltdown. Ask if you can help. If you are told to stay away or your advances for help are refused, just smile at the child/mom/dad/care giver encouragingly and leave.
• Inappropriate behavior may manifest itself in different ways—a child maybe playing oddly, maybe grab food that you’re eating, he may be repeating meaningless phrases over and over again. Use common sense, be accepting, smile, be non-judgmental. The less self-conscious the child feels, the more likely the situation is to resolve itself.
• Don’t talk down to a special needs child under the assumption that just because he is behaving like a two-year-old, he thinks like one too. Autism is primarily a communication disorder and you will be surprised how bright, creative and thoughtful these children are. Communicate at an age appropriate level even if you don’t receive feedback to validate it.
• Just accept them for who they are and love them no matter how they behave. You may be surprised to know that the seemingly low functioning child who may appear non-verbal or non-responsive will understand that and relax around you.
What about your kids/teenagers who may encounter this strange behavior? Your children take their cues from you. If you take things in stride, don’t overreact, treat people with respect in spite of their differences, then so will they.–Nandini Minocha
Developmental Disabilities in the Media
The media plays a vital role in social awareness and acceptance of disabilities. In recent years, autism and other disabilities have emerged from the shadows and become part of the mainstream media dialogue. Soap operas and news features have done their part in including special children in our everyday lives. Some Bollywood examples are the recent Shahrukh Khan movie, My Name is Khan, and the older Taare Zameen Par, Paa, Sadma, and Eeshwar.
Hollywood examples include the recent Dear John, and the old Mercury Rising and Rain Man. In 2008, the trials and triumphs of a real-life autistic child were depicted on the NBC soap opera Days of Our Lives. USA Network’s popular soap Monk had an obsessive-compulsive detective solving crimes, and the medical drama House had an episode based on the illness of an autistic child. The forensic anthropologist Temperance Brennan in FOX channel’s Bones is widely regarded as having Asperger’s Syndrome. The popular sitcom The Big Bang Theory also has a central character with Asperger’s.
More recently, NBC’s new hour-long drama Parenthood features Max, a child with Asperger’s Syndrome. The animated show Arthur on PBS introduced a new character in April, also having autism.
Zee TV has been airing Aap Ki Antara, about a special child who is unable to bond with her family and does not have any friends. The pilot episode dealt with how she is bullied by her classmates. The series follows her through her developmental years, each episode delving into the immediate and adjusted reaction others have to her; and how she deals with every situation life throws her way.
The production team for the series did extensive research on autism, spoke with hundreds of special parents in India, and networked with professionals in the field; the information has been built into a website—http://www.beingantara.com
Amidst all the drama of daily intervention, special education, and insurance battles, the parents of autistic children grow increasingly isolated. One organization in the SF Bay Area lights the path for Indian families with special needs children—Jeena, “Hope for Kids,” http:// www.jeena.org
Jeena is a non-profit organization to support special families with origins in the Indian sub-continent. Member-families have children with a diagnosis of Autism Spectrum Disorder, Cerebral Palsy, ADD/ADHD, and Aspergers Syndrome, among others.
“It can be overwhelming for parents to distinguish between their own needs, the needs of their child, and their family. It gets further complicated as it is difficult to understand the complexity of the system(s) serving children with developmental disabilities,” says Rajni Madan, founder of Jeena. “Jeena’s intent is to focus on the family and empower parents to provide informational and emotional support to one another. The goal is to organize activities that will be beneficial to the special child. We celebrate life and recognize the potential of a child irrespective of the disabilities.”
The celebration of life is evident at the annual show “Jeena Yahan,” where most of the stars on stage are the children. Fun events include quarterly birthday parties, periodic “Mothers’s Night Out” dinners, picnics, and camping trips. Jeena routinely hosts discounted-fee lectures by specialists in the field of special education law, and emergent and established therapies. In addition, Jeena part-sponsors therapists in several fields to hold weekly sessions for special children. Recently, for example, a speech and language therapist conducted speech therapy every other Sunday for 12 weeks for all member children.
“Every family at Jeena understands my life. It is no longer possible for us to sustain friendships with parents who don’t have special needs; but for Jeena, we would’ve had a very lonely life,” says Tara, whose son was diagnosed with autism at three.