RSS Feed

Category Archives: Health

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

pp (1)

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

Advertisements

HIV — the Sindh chapter: Why Karachi has the highest number of HIV patients

The statistics of Karachi with the highest number of migrants make Sindh’s case special

HIV — the Sindh chapter

 

2017-07-02

555502_10151669319898318_1684699250_n (1)

Depression – Career, family life, everything suffers

In a society where mental illness is stigmatised and its treatment is expensive, the harm of not getting treatment for depression can be disastrous

Career, family life, everything suffers

Eventually, you may wander the labyrinth and keep popping pills that sometimes help you sleep and at other times are mood-lifters. By so doing, you become one of the many Pakistanis who pop millions of these “happy” pills to fight a very real and very debilitating illness.

“The total antidepressant market in Pakistan is approximately Rs4 billion, as per annual sales, and is growing at the pace of 16 per cent; the market for tranquilisers or anxiolytics is also around PKR3 billion, with a double digit growth of 10 per cent,” says Nouman Lateef, Director, BU-GI Care, Merck.

“Depression is underdiagnosed and undertreated. People suffer needlessly. On the other hand, some people are misdiagnosed and receive medications they shouldn’t,” says Dr Nadir Ali Syed, a neurologist at Karachi’s South City Hospital.

However, disagreeing with studies that indicate that between 30-50 per cent of Pakistanis are depressed, he feels the actual figure for patients in need of medical attention is closer to 10 per cent. “That is still very common. Major Depressive Disorder is remarkably common in Pakistan, as it is in the rest of the world.”

The disease chooses its prey without disparity on the basis of economics, and strikes people across the board, whether they are rich or poor. In the opinion of Dr Uroosa Talib, Psychiatrist and Head of Medical Services, Karwan-e-Hayat Hospital, the prevalence rate of mental illness is high. “1 in every 4 persons in Karachi suffers. The reasons are many. Lack of basic amenities like water and electricity, poverty, street crime, terrorism and violence,” she says, talking about the social reasons for depression.

Read also: An overdose of self-medication

Shedding light on the medical causes of depression, Dr Syed says that depression can be the primary illness or frequently also be triggered by other medical problems, such as thyroid disorders or neurological diseases. It can be related to pregnancy or menstruation or even to medications or vitamin deficiency. “All depression is neurological in the sense that it is related to brain abnormality. It is associated with changes in chemicals in the brain, such as serotonin norepinephrine or dopamine. Many neurological disorders can be a reason for depression like stroke, Parkinson’s disease, migraine headaches, dementia, or pain from any cause.”

Treatment of depression can be an expensive prospect, and mental healthcare providers are not readily accessible. “In Karachi, Jinnah Hospital and Civil Hospital have psychiatric facilities. Other public hospitals just have OPDs,” says Dr Talib.

Treatment of depression can be an expensive prospect, and mental healthcare providers are not readily accessible for the underprivileged. “In Karachi, Jinnah Hospital and Civil Hospital have psychiatric facilities. Other public hospitals just have OPDs that prescribe anti-psychotics and that is not enough,” says Dr Talib, adding that treatment requires both talk therapy and medication.

Dr. Syed says the most common medicines used in Pakistan are Escitalopram, Citalopram, Fluoxetine, Paroxetine and Sertraline, sold under various brand names.

Medication to treat depression is a potential lifesaver, but must be prescribed by doctors qualified to prescribe them. “Most of the medicines sold over the counter are anxiolytics like Lexotanil, Xanax and Valium. These are more addictive and people use them as hypnotics,” says Lateef, talking about the popular benzodiazepines class of medicines that are used and abused readily. “Anti-depressants’ effect is not immediate; their impact takes time to show. However, a new class of anti-depressants has a quicker onset of effect.”

“A study shows that 60-65 per cent of the patients visiting primary care physicians are patients of depression and anxiety,” says Dr Talib. However, most of those coming to the general physician don’t even know what they are suffering from. “They complain of chronic symptoms like backache or fatigue, which are actually physical manifestations of depression. We go to the doctor and take medicines for physical symptoms, but not for mental illnesses.”

Females being at least twice as susceptible to depression in Pakistan, Dr Talib feels that this is because females have to carry heavier emotional loads, particularly in lower income groups. “These women are already struggling so much to survive that their stress tolerance is very low. Their families don’t understand what is happening to them. They have no one to talk to. They have no acknowledgment of emotional issues and no means to relax themselves. Multiple childbirths and hormonal fluctuation add to the problem.”

Lateef says that while prescribing an anti-depressant, the age and condition of the patient should be taken into account.

“People should never self-medicate. There are specific medications for specific patient types,” says Dr Syed.

“But instead of psychiatrists who should actually be prescribing them, they are mostly prescribed by cardiologists and general physicians,” says Dr Talib.

She also advises that one should not discontinue these medicines suddenly. “They should be tapered off, but only after the doctor weighs the pros and cons. Relapse of depression is very common so one might need a maintenance dose of the medicine for life.”

The treatment for depression is as complex as the disorder itself. Medication must be coupled with counselling and rehabilitation. Afia Wajahat, therapist, works with Mental and Social Health Advocacy and Literacy (MASHAL), in underprivileged areas of Karachi. It is an initiative linked with the Aman Foundation. Her team goes door-to-door to screen people for mental illnesses, provide them therapy, and help them get a second lease of life through rehabilitation and provision of livelihood to bring them out of the clutches of poverty.

In Wajahat’s experience, rehabilitation is most important in order to avoid a relapse. “For that we have to bring them back towards leading productive lives. We enroll them in vocational trainings, socialise with them as they have to come out of isolation, and counsel them to give them confidence.”

The harm of not getting treatment for depression can be disastrous. “We need to make people understand the consequences of depression. Your career, your family life, everything suffers,” says Dr Talib. It is time Pakistanis understand this.

Immunization – Right of children

Unimmunised children continue to pose a challenge to health authorities

Right of children
Awareness needs to be raised among parents.

Like millions of mothers of Pakistan, it did not seem worth it to her to get her children vaccinated as that would make them temporarily sick. “Bacha beemaar ho jata hai; bukhaar charh jaata hai teekay se (The child becomes sick and develops a fever after vaccination).”

However, illiteracy is not the only factor that holds back Pakistani mothers from getting their children vaccinated. A lack of awareness about the importance of Routine Immunization (RI), and an absence of sensitisation regarding facts that dispel myths, seem to be present across the board. Across the road, there are children in upper tier homes in Karachi that have also not been vaccinated, or have not received follow-ups.

Marvi Junaid, a teacher, is an urban mother who, in her own words, is “confused” about vaccination. “I was stopped from getting my sons vaccinated after the initial shots; my husband studied it in detail and was convinced that this could be detrimental to the child’s immunity, and felt it was more of a money-making scheme,” says Marvi. She feels that religious notions also have a role in discouraging people against vaccination. “Even in the upper strata, people believe vaccinations adversely affect children. Once you sense that there is a possible harm of a medicine, you can’t help but stay away from it. I think we need more awareness so that we can make informed decisions.”

Mothers remain the central piece of this jigsaw puzzle, and convincing them of the benefits of immunisation seems to be one of the key factors. Dr Asad Ali, Associate Professor of Paediatric Infectious Diseases at the Aga Khan University, with a research focus on vaccine-preventable infectious diseases and malnutrition, says that the role of mothers in this regard is critically important. “Research shows that many a times, mothers are discouraged by the common side effect of short-time fever and local injection site discomfort after the vaccination of their baby. So they do not complete the series and also don’t get other children vaccinated. What they do not realise is that these transient side effects are a small price to pay for the critical protection their baby will get by receiving the full course of vaccines,” he says.

Dr. Ali adds that awareness needs to be raised among parents that vaccination is a right of their children. “Even if vaccinators are not coming to your house, parents must take their children to local governmental vaccination centers.”

Immunisation of children under the age of one-year against major vaccine-preventable diseases (tuberculosis, diphtheria, pertussis, tetanus, hepatitis B, Haemophilus influenza type B [Hib], poliomyelitis, and measles) is one of the most cost-effective means of reducing infant and child morbidity and mortality. The government of Pakistan initiated the Expanded Program on Immunization (EPI) three decades ago to save Pakistani children from these diseases. All vaccines in the RI schedule are provided free of cost in all public health facilities in Pakistan. Even then, the children are not given the coverage they deserve.

The Pakistan Demographic and Health Survey 2012-2013 sheds important light on some facts regarding the state of RI in Pakistan. Gender preference is seen even in RI. Boys are more likely than girls to be fully immunised — 56 per cent versus 52 per cent. Children’s birth order varies inversely with immunisation coverage — as birth order increases, immunisation coverage generally decreases. 64 per cent of first-born children have been fully immunised, in contrast to 39 per cent of children of birth order six and above.

“When I first became a mom, vaccination was a given; we diligently set reminders for our daughter’s appointments. It seemed as natural as buying diapers. Within the next three years, and with the transition from new mom to an experienced one, I began to read into everything from how the body has a natural mechanism for fighting fever to how to send more probiotics naturally to the gut. With the virals on the rise and doctors liberally prescribing steroids even for a blocked nose, I began to feel that there was too much of unnatural intervention,” says Nida Raza, a working mother of two and a resident of Karachi, who became lax regarding vaccination of her second child. “The anti-vaccination rhetoric on the internet and around didn’t help much and somehow my trust flew out of the window. I have been reading it and discussing it and yet I’m not convinced anymore; I’m confused about its benefits and authenticity.”

Urban-rural differences in immunisation coverage are clear. 66 per cent of children residing in urban areas are more likely to be fully immunised, compared to 48 per cent in rural areas, according to PDHS. There are wide differences in coverage by region. Islamabad has the highest percentage of children who are fully immunised (74 per cent), followed by Punjab (66 per cent) and Khyber-Pakhtunkhwa (53 per cent); immunisation coverage remains lowest in Sindh (29 per cent) and Balochistan (16 per cent), as per PDHS findings.

However, the latter two provinces are seeing a thrust in the efforts for reaching out to children who are not vaccinated. For Sindh, fresh research shows that the numbers of covered children are rising, thanks to efforts of EPI Sindh, yet much remains to be done, and unimmunised children continue to pose a challenge.

EPI Sindh’s Project Director Dr Agha Ashfaq, recently giving an overview of the programme to members of the media, said coverage of RI in Sindh has increased to 45 per cent. In view of the loss of lives of children because of Diarrhea, the Rotavirus vaccine is also being included in the RI in Sindh. Success in Sindh is being seen, for example no stock outs of vaccines were reported in 2015-16 in the province.

Vaccine Logistics Management Information System (VLMIS) is being set up in all districts of Sindh. Polio Eradication Initiative (PEI) and Sindh EPI are working in collaboration. Increased mapping of urban slums is being done. There is also newfound emphasis on the monitoring, evaluation and accountability framework. However, more emphasis is needed in raising awareness among parents, especially mothers, because eventually the decision to get one’s child vaccinated or not remains pre-dominantly with them.

Measles remains one of the key indicators of immunisation programmes in any country. Some 20 million infants missed their measles shots world over in 2015, and an estimated 134,000 children died from the disease. Half of the unvaccinated infants and 75 per cent of the measles deaths are in six countries; Pakistan is one of them. “The frequent outbreaks of measles in our country are a clear reminder that should convince parents about the need for vaccines for their children,” says Dr. Ali.

“Mothers in Tharparkar are very cooperative when it comes to their children’s health but they need to be convinced. We have not reached out enough to create awareness among the mothers,” says Dr. Aziz Kunbhar, former District Health Officer in Tharparkar.

Dr. Ali adds that awareness needs to be raised among parents that vaccination is a right of their children. “Even if vaccinators are not coming to your house, parents must take their children to local governmental vaccination centers.”

Don’t give up hope – Caring for the elderly

Farhanaz Zahidi September 11, 2016

http://tns.thenews.com.pk/dont-give-hope/#.V9_ShvkrLIV

 

geriatric-care

As people age, what can we do to improve their quality of life?
“With the bam of a motorcycle I suddenly became the head of the family,” says Junaid Ahmed Qazi. While caring for the elderly is seen primarily as something that women are expected do, Qazi is defying the norms because life left him no choice. As an only child, life changed for him some 20 months ago when his father, a healthy man in his early 70s, became victim of a hit-and-run case.
“Ten days before the accident we had both climbed five flights of stairs together.” What followed was a brain surgery, weeks in the ICU, and a nosocomial (hospital-acquired) infection his father caught, that left him invalid. “We believe he recognises us and has emotions. He wants to talk but cannot,” says Qazi.
For him the sound of his father’s voice is a far-fetched dream. Yet the optimist in him refuses to give up.
Qazi’s troubles are not unusual. The number of elderly people has risen globally with life expectancy having gone up due to advanced medical interventions. So has the corresponding number of their caregivers. The average life expectancy at birth of the global population in 2015 has risen to 71.4 years according to the WHO’s Global Health Observatory (GHO). HelpAge, a global network of organisations working with and for older people, predicts that by 2050 one in five South Asians will be over 60. The network states that South Asia is growing older faster than any other country in the world.
While HelpAge’s Global AgeWatch Index 2015, that ranks countries by how well their older populations are faring, rates Pakistan at 92 out of 96 countries, healthcare professionals and doctors feel the close-knit family structure in Pakistan mitigates cases of neglect and abandonment of the elderly.
“Caregivers are the unsung heroes when it comes to geriatric care. They are also underappreciated. When Parkinson’s disease or Alzheimer’s strikes a patient, the entire family is affected,” says Dr Nadir Ali Syed, a neurologist at Karachi’s South City Hospital who has been treating elderly people for 25 years. In his experience, if the quality of life of old people in countries like the US and Pakistan is compared, the elderly in Pakistan are much better off, provided their families are taking care of them. “The family is vital for elderly people. Generally, our elderly are not subject to neglect.”
With an increase in urbanisation and more Pakistani women joining the workforce, old homes and healthcare centres for the elderly is a discussion that is expected to come up more and more in the years to come. The need for geriatric medical care and for doctors specialising in the field has also gone up, and related challenges are multilayered.
“There is a lack of awareness and an acknowledgement of geriatrics as a unique specialty with special needs, health issues and care requirements. This exists both at the level of physicians, and at the governmental level. Caregivers often do not understand the needs of their aged family members and the stresses involved in caring for the elderly,” says Dr Saniya Sabzwari who specialises in geriatric care at the Aga Khan University Hospital in Karachi.
“Caregivers are the unsung heroes when it comes to geriatric care. They are also underappreciated. When Parkinson’s disease or Alzheimer’s strikes a patient, the entire family is affected,” says Dr Nadir Ali Syed, a neurologist at Karachi’s South City Hospital who has been treating elderly people for 25 years.
The patience and endurance of caregivers are put to the test in more than one way and, practically, providing satisfactory healthcare to the elderly is an expensive proposition. “The biggest challenge is financial. Nursing care and attendants at home cost a lot. For those who cannot afford to hire professional healthcare at home, the challenge is even more daunting. It becomes physically difficult to look after an invalid person,” says Asma Nazeer, who requested that her real name not be shared.
Nazeer does not want people to know that she served her mother who had Parkinson’s and related dementia for 10 years, since she feels that it will take away from her award. “I was the only one, as all my siblings are abroad, so they sent help in the form of finances and sporadic visits but basically it was just me for 10 years.”
Nursing care at home for the elderly who suffer from a lack of mobility is expensive. Yet more and more people are opting for it. “The biggest determinant for better geriatric care is affordability — to be able to pay for quality healthcare,” affirms Dr Syed.
Two round-the-clock certified nurses take care of Qazi’s father who, he shares, are pampered by him so that he does not have to go through the process of changing nurses and teaching them the ropes repeatedly. The price of nursing care at home is exorbitant but it still costs him less than the hospital would. His father’s room is now nothing less than the Intensive Care Unit of any hospital emanating the smell of medicines and sterilising liquids. Oxygen cylinders and the feeding tube through which liquefied food is transferred to his father’s stomach, like most elderly patients who are no longer able to eat by mouth due to multiple reasons, are maintained by nurses.
On average, depending on the level of expertise and seriousness of the patient’s illness, a certified nurse for a 12-hour shift costs anywhere between Rs1,200 to 1,800 or more, and are hired through an agency. The monthly cost can run into more than Rs100,000 if two staff nurses and two attendants are hired. “Many nurses are now turning towards attending to bedridden elderly patients at home because it pays well,” says 24-years-old Zaiba Kiran, a staff nurse who has been caring for elderly patients who are mostly bedridden. “We go through agents because it suits both the family of the patient and the nurse in case the nurse needs a day off or either of the parties has any complaints.”
Just like it is tough for caregivers, caring for debilitated elderly patients is not easy for nurses either. “With an elderly patient we have to be extra careful. They are very fragile. They can choke easily. We have to keep a constant watch over their vitals. Anything can happen at any time. It also takes more energy and time to learn how to deal with an elderly patient; they are often impatient like children.”
But perhaps the biggest side effect of seeing your loved parent become a shadow of who they used to be is psychological. “We saw the stages where my mother would hallucinate and there were behavioural changes. But the most painful was the stage when she could not even lift her finger. For the last three years of her life she was fed through a nasal tube,” reminisces Nazeer.
One of the jolts a family may receive is when they are told their loved one is now on what is called palliative or end-of-life care, a concept that is often not fully understood. The term does not mean that these are the final hours or days of the patient’s life. It means that the patient suffers from a terminal disease, and there is no hope of a cure. However the dying process may take years.
“With patients of Alzheimer’s the process may take seven to 12 years,” says Dr Syed. The aim of doctors and family, at this stage, is that the quality of life be improved and the patient be made comfortable. “In Pakistan you get drugs like heroine everywhere but intravenous morphine is not available to a dying patient to help relieve a dying patient’s suffering,” says Dr Syed, explaining the obstacles.
The goal, as Dr Sabzwari explains, is not longevity of life, unlike what families or patients want. “Most important is the quality of life.”
To see a loved one in pain takes its toll. “Till my father had the accident, I was a carefree guy. I can safely say I aged at least 10 years within days. I have lost a lot of hair ever since. I do feel depressed inside at times but I cannot afford the luxury to sit and cry because the responsibility of my family is on me,” says Qazi.
Luckily for him, his supportive wife has been his biggest strength. Even families of the elderly are psychologically impacted. “My six-year-old daughter is affected as well; she can’t understand why dada won’t play with her anymore.” Yet, Qazi refuses to give up on giving the best possible care to his father. “My father didn’t stop caring for me when I was a child and was totally dependent on him. How can I stop taking care of him?”
In Dr Syed’s opinion, one must not give up on the treatment and care of the elderly because a lot can be done to improve their quality of life. “A few years ago dementia was considered incurable and some of the treatments available now were not available then. Now, we can drastically improve the patient’s quality of life as well as slow down the dementia.”
The biggest challenge, then, is to not give up hope.

Being a mother – How breastfeeding can save lives of Pakistan’s infants

breastfeeding pic
By Farahnaz Zahidi

August 7, 2016

The myth that just mother’s milk does not suffice has caught on, and this trend is an imminent danger to the lives of Pakistani infants

Her fifth child is due any day. Nazeer Bibi lives in a shanty part of Qayyumabad, Karachi, and has already decided that she will feed her baby formula milk.
“I work in three houses as a domestic help to support my family. I leave at 8 am after dropping my older children to school and return by 4 pm, and the baby will have to be at home. What option do I have? Besides, dabbay ka doodh (formula milk) makes babies healthier. I want my baby to be healthy like the babies in advertisements.”
Nazeer’s baby will be one of the 62 per cent Pakistani infants who are not exclusively breastfed. Only 38 per cent of infants under the age of six months are exclusively breastfed, according to the Pakistan Demographic and Health Survey (PDHS) 2012-13. The rates are the lowest in South Asia.
The myth that just mother’s milk does not suffice has caught on, and this trend is an imminent danger to the lives of Pakistani infants, a danger that is not talked about often enough. As the World Breastfeeding Week is celebrated globally from August 1-7, the conversation around breastfeeding needs to be more audible and frequent in Pakistan. But bringing up the topic inevitably initiates parallel discourse regarding how lives of infants are less safer till formula milk is promoted as a choice. “From tobacco, to sugar, to formula milk, the most vulnerable suffer when commercial interests collide with public health,” says an editorial in medical journal The Lancet.
“Formula milk should only be given when there is a medical reason for it,” says Dr Azra Ahsan, an expert in mother and child health. “The baby gets complete nutrition through breastfeeding. The mother passes on her protective antibodies to prevent common illnesses in the baby. As no water is required to prepare it, unlike how formula milk is prepared, the chances of diarrohea and vomiting are minimised.”
According to the World Health Organisation (WHO), breastfeeding has the potential to prevent about 800,000 under-five deaths per year globally if all children 0-23 months were optimally breastfed. Pakistan has one of the highest infant mortality rates in the region, all the more reason that breastfeeding must be encouraged, especially among the lower income strata.
The PDHS 2012-13 findings also show increase in bottle feeding rates in Pakistan.
“Babies who are born to mothers from the lower income strata are more at danger if they are not exclusively breastfed. The water these mothers use to prepare the formula is unhygienic, and the bottles are not sterilized. Also, formula milk is not cheap. Once they start the baby on it, they start diluting the milk over time so that the formula powder lasts longer; as a result, the baby becomes malnourished,” says Neha Mankani who works as a community health midwife at a hospital in Karachi.
According to the World Health Organisation (WHO), breastfeeding has the potential to prevent about 800,000 under-five deaths per year globally if all children 0-23 months were optimally breastfed.
Once the baby is started off on top feed, the unaffording or unaware mother, over time, starts substituting it with unboiled cow’s milk or low quality tea whitening milk powder which is unsuited for an infant. “We can try and convince the mothers but only till they are in the hospital. Also, Community Health Workers (CHWs) have no access to women who deliver at home,” says Mankani, adding that she and her colleagues try to convince mothers to breastfeed.
However, part of the problem could be that healthcare providers are not doing enough to raise awareness. “Healthcare professionals are the main culprits. Instead of advising new mothers to breastfeed, they help perpetuate the trend of using formula milk. They are given incentives by formula milk companies. Research shows that children delivered in hospitals are more frequently formula fed,” says Dr DS Akram, Founder, Health, Education & Literacy Programme (HELP).
The laws protecting the right of the infant to health and nutrition are there. Lawyer Summaiya Zaidi says that the primary focus of laws like the Protection of Breast-Feeding and Child Nutrition Ordinance 2002 is to protect the nutrition of the child and promote breastfeeding as a primary source of nutrition. After the devolution, each province developed its own Acts for the purpose.
“The Sindh 2013 Act stresses that manufacturing, advertising and sale of alternate sources of child nutrition cannot be promoted as better than mothers’ milk or even compared to it. This stresses the primacy of breast milk as the best source of nutrition for a growing baby, and only when the mother is unable to provide the same to her child should alternatives be made available. It basically controls the manufacture and advertising of child nutrition products by placing certain legal limits on promotion of the same,” says Zaidi.
Yet, the tussle between public health experts and forces of consumerism continue. Companies producing or distributing formula milk refused to give any statement regarding how they justify the tempting advertising campaigns.
At the 69th World Health Assembly earlier this year, a resolution welcomed WHO’s guidance on ending the inappropriate promotion of foods for infants and young children. The guidance states that in order to protect, promote and support breastfeeding, the marketing of “follow-up formula” and “growing-up milks should be regulated. This recommendation is in line with the International Code of Marketing of Breast-milk Substitutes.
“The laws are there, but the implementation is a distant dream. Formula companies continue to particularly tantalise urban markets,” says Dr Akram, adding that the government does not seem interested in this cause. Dr Akram and her team run the Baby-friendly Hospital Initiative (BFHI) of WHO and UNICEF successfully in Pakistan for a few years. “When external funding stopped, the government was not interested in investing in it,” she says, adding that companies that produce formula milk mainly target the urban market to tantalise consumers.
“For the poor population in rural areas, breastfeeding is mostly the only available option. The urban social landscape is more challenging when it comes to breastfeeding. More mothers are working mothers; more options for top feed are available here; more people can afford to buy formula milk. Awareness is needed in both rural and urban areas,” says Dr Sara Salman of WHO Sindh.
According to Mankani, despite trying to raise awareness, most mothers follow popular myths. “They feel the baby is healthier if fed formula, owing to the aggressive marketing of formula milk.”
The biggest challenge for exclusive breastfeeding is the perception that mothers are not producing enough milk and should supplement with formula because the baby cries, says Meredith Jackson-deGraffenried from Helen Keller International. “This perception is driven by the misunderstanding that if the mother is undernourished and poor, she must be incapable of adequately nourishing her baby.”
“We try to teach these women basics about expressing their own milk and how to store it. Mother’s milk stays fine for up to three days in a refrigerator, and up to six hours at room temperature. It’s an economical and healthier option. But myths are hard to fight,” says Mankani.
Despite proven benefits like the mother who breastfeeds return to her pre-pregnancy state much earlier, and the incidence of breast cancer in women who breastfeed being much lower, as Dr Ahsan says, the myths seem to be winning.
“Socially, breastfeeding proves a challenge as well. There are usually no crèche or nursing rooms at work. That’s one reason working mothers stop breastfeeding,” says Dr Ahsan.

Originally published here: http://tns.thenews.com.pk/mother/#.V6hsuPkrLIX

Why is Pakistan’s affluent class so ashamed of getting extra food packed at a restaurant?

Published: February 13, 2016

We associate affluence with wastage; wastage that is criminal in a country where 61 million people are food insecure and malnutrition and stunting are common. PHOTO: REUTERS

“You are embarrassing me!”

Said the husband, upset over the fact that his wife asked the restaurant staff to pack the left overs which included one kabab, three-fourths of a naan and a bit of chicken karhai.

“But it will be wasted,”

She smiled and even carried the large mineral water bottle that was almost untouched with resolve.

It was a delightful dinner my family and I were invited to and this conversation between our host couple was all too familiar. There is the “what will people think” attitude associated with carrying home leftovers and in doing so we forget that edible, clean and fresh food will be thrown away simply because we over-ordered. We associate affluence with wastage; wastage that is criminal in a country where 61 million people are food insecure and malnutrition and stunting are common.

The numbers clash and vary, but all surveys and reports point in the direction that millions of Pakistanis live below the poverty line, with a 2015 World Bank report citing that the number is as high as over 50 per cent of Pakistan’s population. Women giving birth suffer from anemia, get too little protein and give birth to weak and often premature children.

On the other side of the social see-saw, privileged Pakistanis continue to pile their plates with food at weddings and buffets or order more than they can consume and end up wasting food, an offence that should be made a criminal offence.

But this criminal offence is not Pakistan specific. According to data released by the Food and Agriculture Organisation (FAO) of the United Nations, a total of 793 million people world over are estimated to be suffering from chronic hunger, regularly not getting enough food to conduct an active life. Of these, 791 million live in developing regions.

Meanwhile, in every other Hollywood movie, we see people getting up in the middle of the meal saying “I’m done” and emptying half of their plates into the trash bin.

Why did they heap so much food in their plates in the first place? And what precedent are they setting?

The perpetrators of food wastage do so both at an individual as well as at a colossal collective level. Supermarkets and franchise eateries throw away clean food items, even though most items stay okay for a while after the expiry date is over.

A very promising initiative in this regard is Lahore’s Robin Hood Army (RHA). The campaign intelligently used social media to mobilise volunteers and motivate food catering companies and restaurants to bring un-used food to those who needed to be fed.

But is that enough?

Can Pakistan learn from the recent initiative taken by France at the state level?

Recently, France became the first nation in the world that came up with a law that bans supermarkets from wasting food. French grocery stores will now have to donate unsold food to charities. As a result, millions more in need of food will be fed. The law is expected to spill over into all of the European Union eventually.

Yet here we are, Pakistan’s thankless, skimming over pictures of malnourished children with big bellies in Tharparkar dying of hunger, doing the customary “tsk tsk”, and moving on wasting the crust of the pizza slice or throwing away half the meal because it does not taste well. The scourge of hunger is not just limited to districts like Tharparkar.

Adjacent to Karachi’s affluent localities of Defence and Clifton, go visit the kitchens of your domestic help. Stories of malnourished underprivileged children abound. We follow international trends and become vegetarians and vegans for health reasons, but very few are ready to become freegans, or understand how freeganism can help feed more people use consumable food that needs to be reclaimed. We are environment friendly, or so we think, but are okay with writing off good fresh food just because the taste is not up to the mark. Maybe Pakistan needs a Tristram Stuart who comes and gives us a talk on food wastage repeatedly till we get brainwashed into respecting the food on our table.

Our lopsided food choices and unnecessary nakhray (tantrums) are also responsible for this trend of food hemorrhaging. We, as a nation, are getting more and more inclined towards eating more meat. Thus, because of the imbalanced food choices of the privileged, the demand for these food groups increases. This results in a lot of good crops going into fattening livestock to provide more food from the dairy and meat groups. When the balance is lost, the entire food chain equilibrium is lost, with more humans going hungry.

We can’t feed them all, but we can feed some. That packet of leftover food at the restaurant or café can be given to the kids at the signals. We can be more vigilant about giving away and sharing food items in our fridge and pantry before they are no longer edible. Small things will make a difference. But above all, we have to get rid of the ungrateful attitude towards food. We are the blessed ones. Let us be thankful till God is giving us enough food for the fill and share the blessing.