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No time to sensationalise – How Media Reports Suicide

The journalists reporting on suicide in Pakistan are not really trained to do so. They are learning as they go along by trial and error

No time to sensationalise

Death induced by suicide is a life cut short by self-directed violence. It finds its way in the newspapers and news TV channel segments readily. Often mediapersons reporting it do not know what an important part of the equation they are: With every suicide, there is an unfortunate but important duty laid on the shoulders of the mediaperson working on that news story. Will this opportunity be used to raise awareness, and perhaps help save lives from a similar fate? Or will it be just another sensationalised bit of news?

The choice is ours. We, the journalists, have important work to do in society as relayers of information. This must be done carefully, consciously, and sincerely.

But when it comes to mental health issues, particularly suicide, is it really the fault of the journalist, when he or she has never been trained in the subject?

Journalists have “beats” to report on; health is an important beat — public health, sexual and reproductive health, maternal and child health, and other sub-specialties under the health beat.

However, there has been no formal training of Pakistani journalists to date on how to have mental health as a beat, and how to report on it. If a journalist has organically acquired a certain sensitivity to report on delicate issues, then he or she will apply it when reporting on suicide as well. Yet journalists may often get lost in the quagmire of details when reporting on a suicide. Details like the where, when and how. The opportunity of raising awareness on the issue is often lost in such reporting.

This year in June, fashion designer Kate Spade and celebrity chef Anthony Bourdain died by suicide just days apart. There have been relatively well known Pakistanis who died after committing suicide. This has shed media light on the subject. A study on ‘Newspaper Coverage of Suicide‘ done at Sindh University by Mahesar RA states that “One person, after every 16 minutes, dies not merely because of accident or any other disease but intentionally because of suicide [sic]”.

However, the journalists reporting on it in Pakistan are not really trained to do so. They are learning as they go along by trial and error. The subject of “suicide” — and mental health on the macro level — is staring at us in the face as an unavoidable news beat. But the lack of training leaves means we are making mistakes.

Reporting on suicide, and mental health issues, is a huge responsibility, as well as an opportunity to make a difference. These are not stories to be sensationalised. These are not lifestyle or entertainment stories.

One of the most common mistakes is extreme positions taken by the media when reporting on suicide. One extreme is stigmatising and re-stigmatising both the person who committed suicide as well as the family. The sad music while reporting on suicide on tv, the hackneyed jargon, the nuanced but audible judgment in the news report — it all shows a lack of objectivity.

However, the other dangerous extreme is romanticising the act of suicide — of glorifying it, and instead of presenting facts about this act of extreme self-directed violence, perpetuating myths about it and calling it a “choice.” With the suicides of the aforementioned celebrities (Spade and Bourdain) experts began talking about the risk of triggering what is called the “Suicide Contagion.”

Experts of mental health affirm that suicide (of one or multiple well-known people), can lead to an increase in suicidal behaviour among people who are already at a risk of it. Thus, it is important that these news reports do not just mull over details and allude to it as a heroic act, but present the fact, which is that suicide is, in a majority of cases, linked to mental health issues.

Suicide almost always is not something that happens suddenly out of the blue. It has been considered by the person earlier. There may have been warning signs which people close to the person may have missed. An article published by International Journalists Network titled, Guidelines for Reporting about Suicide, aptly suggests to journalists that they must not suggest that a suicide was caused by a single event. “Suicide is complex, and is often the outcome of different causes, including mental illness — whether recognised and treated or not,” says the article.

Giving details of the method employed for the suicide may also contribute to the suicide contagion. Graphic details and photographs are not only disrespectful and insensitive to the deceased and the bereaved family, but also end up giving ideas to those who may be thinking on the same lines.

Care must be exercised even when writing an obituary for the person who left this world — whether as a journalist on a news platform or as a friend or peer on the many social media platforms. Be careful of the language you use. And most importantly, focus objectively on that person’s life instead of the methodology of death.

Pakistan Tehreek-e-Insaf’s then presidential nominee, Arif Alvi, had publicly suggested a readily available 24/7 psychiatric helpline in September 2018. In November 2018, the President, while addressing the 22nd International Psychiatric Conference organised by Pakistan Psychiatric Society (PPS) said that everyone should play his role for establishing a healthier society in the country. The government can and must play its role too in this regard, and the media can play its role by reminding policymakers and those in positions of power to recognise that mental health must be put on the forefront of the list of priorities when it comes to public health.

WHO’s 2014 report, “Preventing suicide: a global imperative” estimates that for every suicide there are at least 10–20 acts of Deliberate Self Harm (DSH). By this estimate, there may be between 130,000 to 270,000 acts of DSH in Pakistan annually. This means that there are signs before the actual act of suicide is completed. Journalists must include then, after consulting a mental health doctor or therapist, some points about how to recognise the signs that a person may be inching towards suicide, and what can be done to help such a person. The reader can also be directed towards Suicide Prevention Helplines.

Reporting on suicide, and mental health issues, is a huge responsibility, as well as an opportunity to make a difference. These are not stories to be sensationalised. These are not lifestyle or entertainment stories. These are stories that come under the beat of “health”. Once journalists recognise this, the reporting will become more responsible. Most importantly, out of these dark and seemingly hopeless news stories, there can emerge a ray of hope — the hope that if reporting is done intelligently and carefully, it may help spread much needed awareness. It may help someone out there. It may help save a life.

http://tns.thenews.com.pk/time-sensationalise/#.XDxIJbhS81k

Antibiotic overkill – How Pakistanis are putting themselves at risk of antibiotic resistance

Treatment for viral diseases is leading to drug-resistant infections

Antibiotic overkill
We are sitting on the brink of a health disaster. Humans may again reach a stage where even small cuts, minor injuries and seemingly innocuous infections can prove to be killers — all of these are conditions that can be effectively treated by antibiotics. Misuse and overuse of antibiotics is building in our systems resistance to these drugs and a time comes when these medicines are no longer effective in fighting the bacteria and infections they were designed to ward off.

Antibiotic resistance is leading to untreatable infections. Any age group can be affected by it. If care and caution is not exercised in the use of antibiotics, humans could be in serious trouble. We already are, if numbers are to be believed. Self-medication and use of antibiotics without thinking twice is a problem. The fact that Pakistan has, as reported by the Pakistan Medical Association, more than 600,000 quacks who pose as doctors and prescribe antibiotics without any need or deliberation, exacerbates the issue.antibiotic-awareness-poster 1

It is very common practice to go to “pharmacies” which are usually counters in grocery stores, run by people who are not pharmacists, and ask for any random antibiotic that the patient feels “suits” him or her. While it may have been effective the last time you used it, and the time before that, this time it may not work as you have developed resistance to it.

“We see a lot of antibiotic misuse at the hands of general practitioners as well as quacks. The urgency to use antibiotic sometimes also arises from patients demanding that they return with some medication if they have visited a doctor,” says Dr. Nosheen Nasir, Senior Instructor, Adult Infectious Diseases at the Aga Khan University (AKU).

“We see antibiotics being used for viral upper respiratory tract infections and for presumed enteric fever based on typhidot results which are erroneous and misleading.” Dr Nasir adds that antibiotic overuse can lead to increase in drug-resistant infections and significantly increase the risk of morbidity mortality. “Infections which were previously simple to treat now require use of more toxic and expensive antibiotics which are usually given intravenously, leading to unnecessary prolonged hospitalisations.”

World Antibiotic Awareness Week (WAAW), held from November 12 to 18 this year, aims at increasing global awareness of antibiotic resistance, AMR (Antimicrobial resistance) and to encourage best practices. AMR occurs when microbes, such as bacteria, become resistant to the drugs used to treat them. The 2018 WAAW campaign has two key messages: “Think twice. Seek Advice” and “Misuse of Antibiotics puts us all at Risk”.

AMR, as Dr. Nasir adds, refers to resistance among all kinds of micro organisms such as bacteria, fungi, parasites etc. when they are exposed to antimicrobials including antibiotics and antifungals.

She shares an example of antimicrobial resistance that we are facing today in Pakistan. “People get a lot of antibiotics unnecessarily for presumed typhoid fever, also called enteric fever. This has led to a country-wide outbreak of extended drug resistant (XDR) typhoid fever, sensitive to only two antibiotics, one of which can only be given intravenously. This has led to serious life threatening infections particularly in children,” she says.

November 2018 also saw “Call to Action on Antimicrobial Resistance” from November 19 to 20, co-hosted as a second global event by the UN Foundation to help drive action to stop the rise and spread of superbugs. Dr. Fatima Mir, Assistant Professor of Pediatric Infectious Disease at the AKU, explains that “Super bugs are germs which over time have become resistant to common antibiotics through new mechanisms.” She cites some of the lethal super bugs in Pakistan as under:

1.Multidrug resistant gram negative organisms like klebsiella pneumoniae, e.coli and serratia, leading to newborn sepsis.

2.Extended spectrum beta lactamase inhibiting (ESBL) gram negatives like e.coli, klebsiella, enterobactor sp, which can cause gut, abdominal and urine infections in all ages

3.Penicillin resistant streptococcus pneumonia, causing lower respiratory tract infections in all ages

4.Multidrug resistant Typhoid, effecting all ages

5.Multidrug resistant Tuberculosis (TB), affecting all ages

In Dr Mir’s professional experience, Pakistanis generally have a tendency to hurry towards antibiotics, “Especially in cases of Upper Respiratory tract illnesses which are usually viral but also associated with symptoms which make one miserable, like congested nose, throat and body aches, parents feel kids won’t get better without antibiotics, and most physicians succumb to pressure and prescribe antibiotics even for clearly viral illnesses.” She adds that one reason for over prescription is lack of low-cost testing to establish a viral cause. “Usually a full course of antibiotics is cheaper than a test for a single viral antigen, so physicians make a misplaced choice of empiric antibiotics to appease parents (of child patients) in place of expensive testing for an essentially self-resolving viral illness,” she says.antibiotic-awareness-poster 1

The problem of resistance to drugs affects all age groups. The elderly are not spared either. Only tests conducted in the laboratory can confirm whether the cause is viral or bacterial. Lack of mobility of elders to go or be taken to laboratories, plus general caretaker fatigue that sets in when an elderly patient has been dependent for long, means a lot of elderly people end up getting even fewer lab tests run on them than patients of other ages.

The easiest way out is to start them on antibiotics without getting even a simple test done like the “culture” which tells which antibiotics would still be effective for that particular patient. “As older patients may not manifest with typical symptoms of infection, antibiotics are frequently given often causing antibiotic resistance. They often may not have fever, and the infection may only manifest as weakness. This practice can be curbed if investigations are done early to confirm infection prior to starting antibiotic,” says Dr Saniya Sabzwari, Geriatric Specialist at the AKU.

In 2017, a “National Action Plan” was drafted by the Health Ministry in Pakistan to fight antimicrobial resistance, developed in the light of the five strategic objectives listed by the World Health Organisation’s (WHO) Global Action Plan for AMR.

Between the years 2000 and 2010, global consumption of antibiotics has increased by 30 per cent. Some 700,000 people die every year from infections that don’t respond to antibiotics. If this is not controlled, AMR could cause 10 million deaths each year by 2050; this number would be more than the deaths caused by cancer.

While over-dosage leads to antibiotic resistance and other serious side effects, under-dosing is a problem too. “This means that the drug, even if chosen correctly, is ineffective because it cannot reach effective concentration in blood. Incorrect dosage is one of the main contributors to antibiotic resistance in addition to incorrect usage,” says Dr. Mir.

http://tns.thenews.com.pk/antibiotic-overkill-2/?fbclid=IwAR2-HxUffRu4YBqq28ssqZof7LnKQDMCoG04GsvnvS_FnQt-pKNWEyBIW-Q#.XAJgG81oQ1k

The first 1000 days & after: How hunger effects brain development

The crippling effects of hunger on brain development, and in turn on education, employment and quality of life, become worse if certain vitamins and nutrients are missing

The first 1000 days and after

The image of an emaciated, almost wasted, skinny child comes to mind when we talk of malnourished children — children with thin arms, protruding bellies, and light-coloured hair. Yet, the price malnourished children, their parents, and entire nations pay is far more than just what is apparent.

A malnourished child’s ruling organ, the brain, does not develop at an optimal level due to lack of sufficient nutrition. All stakeholders continue to pay the price for decades to come — both on a personal and a collective economic level. Malnourishment, then, may be the silent and neglected brain drain that no one is talking about.

According to Dr Irshad Danish, National Coordinator, Scaling up Nutrition (SUN) Civil Society Alliance, Pakistan, stunted children have 7-months delay in starting school, have lower intelligence quotient (IQ), are more likely to repeat a grade of school, complete one year less of schooling on an average, and are less likely to graduate high school.

“The effects of malnourishment include a low IQ, poor concentration, attention deficit, and memory disorders,” he says. Mentioning the findings of a report launched by the Pakistan Scaling Up Nutrition (SUN) Secretariat at the Ministry of Planning Development & Reform, in collaboration with the United Nations World Food Program (WFP), he adds that the consequences of malnutrition — including healthcare expenses and lower productivity — cost Pakistan US$7.6 billion, or 3 per cent of GDP, every year.

He says that children who are malnourished learn less at school and earn less when they grow up. Iron and Iodine deficiency in childhood reduces IQ by up to 25 and 13 points respectively. Cognitive deficits from childhood stunting, anemia and iodine deficiency disorders depress future adult productivity, valued at Net Present Value of $3.7 billion per year.

Brain development of the foetus starts in the womb of the mother, particularly in the third trimester, explains Dr D.S. Akram, Founder, Health, Education & Literacy Programme (HELP). “If the mother is malnourished and anemic, there are more chances that the brain growth will not be optimal as insufficient hemoglobin in the mother’s blood means insufficient oxygen for the foetus,” she says, further adding that between the age of three to six months, the baby’s brain grows rapidly, and if there are factors like a malnourished mother, premature birth of the child, or the mother not exclusively breastfeeding the child for the first six months, brain growth may slow down.

Dr Akram also says that if the child does not receive enough food as well as brain stimulus in the first two years, it may lag behind in its key developmental milestones. “When the child goes to school, his ability to perceive, to memorise, his motor skills — all will be slow. This will result in a lack of motivation in the child who will not experience the pleasure of learning. It’s a vicious cycle,” she says. For optimal brain development, according to her, it is imperative that timely introduction of a balanced diet of solid food is introduced, containing micro-nutrients, proteins and fats.

Solutions include early initiation of breastfeeding, exclusive breastfeeding for six months, starting complimentary feeding after six months, and continuing breastfeeding for two years.

Quantifying the link between brain function, academic performance and malnourishment, the Hunger in the Classroom report, 2015, by Food Bank Australia, stated that over two thirds of students who miss out on breakfast can find it difficult to concentrate (73 per cent) or can become lethargic (66 per cent), with over half experiencing learning difficulties (54 per cent) or exhibiting behavioural problems (52 per cent).

Perhaps this is why for Saeed Qureshi, the most rewarding part of his decade-long service of leading Aman Ghar (an initiative of the Aman Foundation), was working on feeding underprivileged school-going children in Karachi.

Since last year, Aman Ghar joined hands with Saylani Welfare International Trust, and meals are distributed to deserving students of 15 schools, which serves both as an incentive for children to come to school, as well as helps them perform better at school. Aman Ghar’s motto has been “food for education”.

Qureshi explains that before the inclusion of the lunch programme, the students were reported to pass out during school hours due to hunger, especially in the summers. Since the lunch programme started, there has been a significant change in the academic performance of the students. “I have seen children come to school on a hungry stomach, eating only paapay (rusks) and chai (tea) at most. Their decision power is impacted as is their ability to shine academically. They are dull and tired, and cannot participate in sports.”

Qureshi says that they mix four kinds of grains to make roti for the wraps for the children, which make up for deficiencies like iron and niacin that boost brain activity. “We have also tried to incorporate leafy vegetables, pulses, and meat in the diet,” he informs.

The crippling effects of hunger on brain development, and in turn on education, employment and quality of life, become worse if certain vitamins and nutrients are missing. Neurologic deficits can be a result of deficiencies in micronutrients like folic acid, iodine, iron, zinc, selenium, copper, magnesium, vitamins A, C, D, E, B6 and B12.

These deficiencies can result in learning disabilities, mental retardation, abnormal levels of cognitive and mental functioning, and even depression, anxiety and withdrawal, all detrimental to a child’s focus on academic activity. Malnourishment can also result in behavioural issues, and lapses in memory and concentration.

When asked how parents can avoid this happening to their children, Dr Danish says that “the first 1,000 days between pregnancy and a child’s 2nd birthday sets the life-long foundation for human capital. After two years of age, the impacts of stunting are irreversible”.

In his opinion, solutions include early initiation of breastfeeding, exclusive breastfeeding for six months, starting complimentary feeding after six months, and continuing breastfeeding for two years. Also, it is important to avoid junk foods and sugary drinks, provide diverse and nutritious balance food which should have necessary amount of proteins, vitamins, minerals and carbohydrates, and consume milk, fruits and vegetables.

“If all relevant stakeholders work together and implement joint interventions for nutrition, we can avoid bad impact of malnutrition on learning, earning and health,” says Dr Danish.

 

http://tns.thenews.com.pk/first-1000-days/?fbclid=IwAR3DSapGsbpLrzaobOQxPG3LlD8d0bgoADYqOyzrpcD649V8yYYunBG3W-w#.XAJckc1oQ1l

 

Me and my Hashimoto’s – Living with an Autoimmune condition

 http://tns.thenews.com.pk/hashimotos/#.WtmSb4hubIU

If a person has one autoimmune disorder, there are chances that he or she is susceptible to getting another one

Me and my Hashimoto’s

I am a journalist, and there is this thing with journalists – they have this insatiable need to inform others about what they learn. Journalists are people who relay information, even if it is information about an autoimmune disorder they are suffering from.

I have been wanting to write about an autoimmune disorder that I have been suffering from. In turn, I wanted to write about autoimmune disorders – a wretched group of diseases that very many people suffer from, but often do not know what it actually is that is making them feel unwell.

I started asking people who I knew had different autoimmune disorders. Many of them agreed to speak to me for the write-up but requested anonymity. Others refused to speak about their disorder. It is understandable as it is not easy to announce to the world that you have something that makes you feel unwell so often.

But autoimmune disorders need to be spoken about and written about because they are more common than we realise. We also need to speak about what we go through because it is a means of helping those who are going through something similar. Suffering from a disease or a disorder is not something that should embarrass or demean us. It is what it is. All we need to do is manage it the best we can, and for that we need awareness. Write-ups like this one are aimed at just that one goal — creating awareness that might tell someone else reading it that “you are not alone”.

For me, it started with just feeling down and listless and unusually cold, very cold. I saw people around me sitting comfortably in air-conditioned rooms with fans on in Karachi summers, but I felt spears of cold entering my ribs and my back. Getting up in the morning became a struggle. There were aches and pains and just feeling down, with no energy. I started realising that I could no longer lose nor maintain my weight that easily. But I knew it was time for an SOS when out of nowhere I would break out into rashes — rashes that would come out of nowhere and disappear without any medication as well.

I googled all my symptoms. My google search findings remained inconclusive. Not knowing what is going on inside your body is one of the scariest feelings because you cannot do much about what you don’t know.

Awareness about my Hashimoto’s Thyroditis has led me to understand better things like where my constant fatigue stemmed from, and why insomnia keeps making surprise visits to me, and also why unexplained aches and pains keep coming and going.

My symptoms led me to knock on the doors of many genres of doctors — general physicians, skin specialists, orthopedic specialists, homeopathic doctors, and even a psychiatrist, as google kept bringing up the suggestion that perhaps this was nothing but depression. It was finally an allergy specialist who, luckily for me, was extra cautious, and advised me to get my tests done, including one for autoimmune thyroditis. The result was clear. I finally had a diagnosis. I have what is called “Hashimoto’s Thyroditis”, and it is an autoimmune disease. It is an annoying disorder to put it simply and honestly, because it makes life a drudge. The good news is that for the most part, it is not an extremely dangerous condition. Yet, living with an ongoing condition is a test of patience — both physically and emotionally.

To put it simply, autoimmune diseases are when the cops who have the job of catching the bad guys start harming the good guys. It is when the body starts getting attacked by its own immune system, and instead of attacking infections and anything that harms us, the immune system starts attacking the normal body tissues.

Why do certain people get them and others don’t is a question medical science is still trying to answer. It can be one of many reasons. For starters, more women get afflicted by these disorders than men do, and one reason experts give is the female hormones, particularly estrogen, that may lead to a predisposition to autoimmune diseases. Another reason could be hidden in our genetic pool. Certain families report higher incidences of illnesses like Multiple Sclerosis and Lupus, but there is no way of telling why some people in these families get them and others don’t.

Are autoimmune diseases on the rise? Many medical experts believe yes they are, and they feel environmental factors like ready use of chemicals and solvents, unhealthy environments, and infections could be the culprits. But others feel that these diseases have always been there but we are just getting better at diagnosing them. Some suspect the increased use of fats, sugar, and processed foods. Unhealthy food choices lead to inflammation that leads to an overactive immune response in the body. Another hypothesis is that use of sanitisers, antiseptics, vaccines and keeping one’s self in overly sterile environments leads to a lack of exposure to germs, and resultantly sometimes our immune system overreacts as a result and goes into autoimmune mode. And maybe, just maybe, stress and emotional trauma triggers these disorders.

Some common autoimmune disorders are Rheumatoid arthritis (RA), Psoriasis, Multiple Sclerosis, Systemic Lupus Erythematosus (Lupus), Inflammatory Bowel Disease, and even Type 1 Diabetes. Some of these like Lupus can lead to serious complications if not managed with care.

If a person has one autoimmune disorder, there are chances that he or she is susceptible to getting another one.

Awareness about my Hashimoto’s Thyroditis has led me to understand better things like where my constant fatigue stemmed from, and why insomnia keeps making surprise visits to me, and also why unexplained aches and pains keep coming and going. I have understood that I have to regularly visit a doctor for follow-ups, and keep a check on my thyroid levels. I have understood that taking medicines regularly is a lifeline. And I have understood that a healthy lifestyle –healthier eating, exercise, yoga, sleep, faith in God – will help me in this fight against this disorder.

I have also come to understand that one needs to be more sensitive to what other people are going through, because we often do not know what is causing that person to feel a certain way. Why do certain people feel down more than others? Why do some people put on weight more than others? Why do some sleep like babies while others struggle to even get a few hours’ snooze? Why do some people feel so hot and others feel so cold? Who knows who among us is going through an invisible but debilitating condition?

Autoimmune disorders are not all bad, then, are they? Maybe they make us a better person.

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The writer is a freelance journalist with a focus on human rights, gender and peace-building. She works in the field of Corporate Communications.

AKU play ‘Main Bhool Gaya’ highlights dementia problem

Published: January 31, 2018
Plays like these are integral in raising awareness and educating society about the care of the elderly and creating a more inclusive society. PHOTO: COURTESY AKU

Plays like these are integral in raising awareness and educating society about the care of the elderly and creating a more inclusive society. PHOTO: COURTESY AKU

KARACHI: Dialogues interspersed with laughter from the audience at Aga Khan University’s packed auditorium on Monday while watching a play on dementia. Watching attentively, there were many moments of silence where audience found itself relating to the pain of having seen a loved one go through the ordeal of dementia.

The play, ‘Main Bhool Gaya’, was created by Patronus Theatrics, which is a production group run by students and faculty of AKU. It was aimed at raising awareness about dementia and the story showcased a family’s struggle in caring for an elderly father suffering from the disease.

Dementia is a disease that mostly affects the elderly, but can also be triggered due to other factors or ailments. It can often go unnoticed by family members and health professionals in Pakistan. Often, the signs of dementia are misconstrued as being ‘a normal part of ageing’.

Patients of dementia forget not just words, but a sense of time and whether they are in the past or in the present. As it is a progressive disease, the patient starts forgetting basic physical functions overtime.

While it is painful for the patient, it is equally difficult for the family and caretakers who often do not understand how to handle the situation. The play portrayed how a family struggled to tackle the issue, particularly the daughter who was most sincere in her service to her aging father.

AKU Department of Family Medicine Associate Professor Dr Saniya R Sabzwari was the executive producer and wrote the script, along with Kumael Azhar and Ibrahim Sajid. At the end of the play, she expressed the importance of spreading awareness about dementia.

“Humourous moments have been added to the play to give the audience a breather,” said Dr Sabzwari, explaining that the topic of dementia can be depressing.

The play was directed by Sunil Shanker with Maeen Abbas as the student director and Kaleem Ahmed as the student producer. The actors received a thunderous applause at the end, particularly Azhar, who acted as Colonel Haidar, a man who began to forget who he is, yet was kept company by a younger version of himself in his world of alternative realities.

Dementia, as the play highlighted, is not just about ageing, but is a disease that needs to be understood, as does the plight of both the patients and the caretakers. Plays like this are integral in raising awareness and educating society about the care of the elderly and creating a more inclusive society.

https://tribune.com.pk/story/1622135/1-aku-play-main-bhool-gaya-highlights-dementia-problem/

Old age matters – What being a caregiver to my mother & her passing taught me

Caring for the elderly is not just an act of love. It is a skill that one acquires over time, whether you are family or a paid caregiver. It is an upward learning curve, and the only way out is through

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Two months ago, I lost my mother after her ten years’ long battle with the debilitating and progressive disease called dementia. On that first night after she passed, I got a message from a friend saying, “As you settle down to spend the first night without her in this world….” These words struck a chord with me. As people poured in to condole, and said, “you must have been prepared,” I honestly didn’t know if I was actually prepared, even though I knew it was inevitable. You’re never really prepared for the emptiness the loss of a loved one leaves. Yet, awareness helps us deal with this testing time.

For those who can afford to hire help or get their elderly loved one treated by trained healthcare practitioners, the blow is relatively cushioned, and the biggest struggle is the emotional pain one goes through to witness them fading away. This is when you learn the word ‘palliative’ care. “Sadly, less than 1 per cent Pakistanis have access to specialty palliative care,” says Dr Atif Waqar, Geriatrician and Section Head for palliative Care at the Aga Khan University Hospital, Karachi.

Geriatrics and Palliative care, as he explains, are two different sub-sections of medical care. “Geriatrics is care and treatment of the elderly, while palliative care is aimed at relief and prevention of suffering for both the patients as well as their families. Palliative care is not necessarily end of life care; that is a common misconception that sometimes even healthcare providers have,” he explains. Palliative care, then, is a more holistic approach. “It is actually all about living, not death. However, if all treatment options have been tried and exhausted, then palliative care does involve end of life or hospice care.

“Geriatrics is care and treatment of the elderly while Palliative care is aimed at relief and prevention of suffering for both the patients as well as their families. Palliative care is not necessarily end of life care; that is a common misconception that sometimes even healthcare providers have,” says Dr Atif Waqar.

Thus, we can say that all end-of-life care does come under palliative care but all palliative care is not end of life care.” Palliative care is a shift in focus where medical practitioners try to palliate the symptoms. Studies show that terminally ill patients actually live longer with holistic palliative care rather than with aggressive treatment.

As a son and caregiver, Afaq Ahmed, who lost his mother a few years earlier and his father just six weeks ago, has had to make some tough choices along with his siblings. He describes the painful experience of seeing his father, who loved to eat, refusing to eat due to dementia. “He would purse his lips tightly, and even if we managed to put something in his mouth, he kept the food in for a long time,” he says. The disease progressed, and he shares that it was a very tough decision when they decided that they wouldn’t use [aggressive] means to prolong his agony.

“Doctors and physicians are trained to save lives, which is why sometimes they use invasive means to keep the patient alive, but end up prolonging their suffering,” says Dr Waqar, and shares the questions that palliative care doctors put in front of the patients’ families. “Questions like ‘What would your loved one have wanted? Would they have wanted to live with this quality of life in a state of complete dependency? Would they have liked to be on a ventilator or someone pumping on their chest for CPR when it’s of no benefit? Would they rather choose to pass with dignity?’” What is often seen as defeat, then, by caregivers or physicians, is actually an informed choice.

“Doctors told us to consider if this is the kind of life our father would have wanted. My parents repeatedly used to say that they would not want a life of dependency and they were ready for the transition. We based our decision on the honest answer to that,” says Ahmed. He and his siblings decided to not force feed their father, neither by mouth nor through means such as a nasogastric (NG) tube.

Read also: Care for the caregivers

However this does not imply that all medications and treatment is discontinued. According to Waqar, intravenous fluids and antibiotics are actually therapeutic and if they help alleviate symptoms they should be continued till the end. Pain relieving medicines, like Morphine, are an option at this stage.

“Morphine is on WHO’s List of Essential Medicines that should be available because it is everyone’s right to be relieved of pain. But in Pakistan limited hospitals are given very specific and limited quotas. We strongly urge the concerned drug regulatory and health authorities to make it available to trained medical practitioners,” says Dr Waqar.

Ahmed and the family did use last resort pain relieving medications to ease his father’s pain in the last few days. “These medicines are not easily available but you can get them through the hospital or doctor under whose treatment your loved one is.”

It is not, however, easy to predict when it is time to let go. “Prognostication, or an estimation of survival, varies from illness to illness. It is both a science and an art. The variables differ from person to person. Doctors run tests to determine the actual situation,” says Dr Waqar. In his opinion, estimation is much easier in terminal stage cancer, for example, but not so easy in neurodegenerative diseases like dementia.

“Sometimes end stage patients surprise you and bounce back. There are dips, plateaus and peaks in their condition. However, when we see a steady decline in these four areas — functional, clinical, nutritional and cognitive — we know that the patient is approaching the end.” You see your loved one becoming increasingly dependent for even small chores, from being on the wheelchair to being bed-bound, and sleeping most of the day.

“They eventually stop eating; it starts with a decrease in taking solids but goes onto difficulty in even swallowing liquids. This is a natural process towards ‘transition’ which we commonly know as death. When the organs begin to shut down, the caloric requirement becomes lesser and lesser,” explains the doctor, adding that the family often thinks they are starving, which actually they are not; they no longer need that much nutrition. Caregivers attempt to force feed them which does more harm than good as the food ends up going in the lungs and aspiration pneumonia can develop.

In a lot of cases, the patient suddenly begins to show improvement or a burst of energy in the last few weeks or months. “That is actually the calm before the storm. This burst of energy helps them finish unfinished business. These facts are scientifically proven and are not hocus pocus,” Dr Waqar says. In his opinion, people in their end stage have very strong awareness about the upcoming transition. Patients are known to experience visitations of their loved ones who have already passed on and are now beckoning them. Near Death Awareness (NDA) is part of the dying process but caregivers often confuse it with delirium. Some patients who can articulate their experiences communicate what they are going through; others, like patients of advanced dementia, may not be able to.

The role of the caregivers, whether they are family members or paid staff, is one that is both painstaking and rewarding. Zaiba Emanuelle, a certified nurse in Karachi, works with elderly patients and has seen a surge in the number of nurses being employed in homes for the elderly. In her experience, patients are easier to handle compared to families of the patients. “The family keeps interrogating us. I understand that they have to do it, but it’s not easy dealing with them,” says Zaiba. “I have learnt that to deal with elderly patients, you have to understand them, and treat them with as much gentleness as one would treat children. It’s all about patience and flexibility.”

As a caregiver, I have learnt tremendously about life and death because of this sojourn on the path of dementia with my mother. I have learnt about what it means to be an elderly person in the twilight years of life, or to be a caregiver. Caring for the elderly is not just an act of love. It is a skill that one acquires over time, whether you are family or a paid caregiver. It is an upward learning curve, and the only way out is through.

When senior citizens are not a priority

Expecting specialised geriatric care might be too ambitious for the average Pakistani who sometimes does not even have a comfortable home or a devoted caregiver. “The numbers of neglected and abandoned senior citizens have escalated, and the reasons are many,” says Faisal Edhi of the Edhi Foundation that has been taking care of abandoned and underprivileged elderly since inception.

He feels that the dismantling of the joint family system, urbanisation, the thrust on industries, and the increase in population — all this has left families with little time to care for their elderly. “The government needs to face this reality and think of setting up old-age homes in peri-urban areas and outskirts of cities; this would be a much more economical option compared to hospitals. But senior citizens are not the priority in an already failing service sector,” he says.

In 2014, both Khyber-Pakhtunkhwa (KP) and Sindh provincial assemblies came up with laws guarding interests of the elderly. The laws are ambitious. Sindh Senior Citizen Welfare Act, 2014, aims at lodging establishments, free geriatric and medical services, 25 per cent concession in all private medical centres and 25 per cent discount on purchase of essential commodities to name a few. However, what is missing is the implementation. Quality care for the elderly requires a steady stream of money, something not many Pakistani families can afford.

http://tns.thenews.com.pk/old-age-matters/#.Wh–3kqWbIU

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