Dying with Indignity in Iran

Published on: https://iranwire.com/en/blogs/693/4344

In this guest blog, Dr Nima Ghadiri describes the harrowing experience of the end-of-life care his grandmother received in an Iranian hospital, and the betrayal of the principles of bioethics, which were first identified many centuries ago by Iranian polymaths, including Avicenna and Razi.

Avicenna (left) and Razi (right), Persian physicians and polymaths who helped define the principles of bioethics, used by healthcare professionals to this day

My beloved grandmother and closest friend Batool Sepassi died in an Iranian Hospital ICU (Intensive Care Unit) following a short illness.

During the course of a viral illness, she became increasingly short of breath and had to be admitted to a local private hospital. She had a chest infection and was taken to the intensive care unit accompanied by close family. At this point the family had separated to go to the payment desk, and my grandmother was taken to ICU, though no medical history was taken nor treatment started until payment was organized (the privilege of private healthcare).

There were some major flaws in treatment. Having been admitted with a chest problem, it took 30 hours for a chest consultant to see my grandmother, though not without a battle — we were told “this patient is not on my list” — and a serviceable X-ray was only taken the following day.

My family was only allowed an hour a day to visit my grandmother, which was extremely hard given that she thrived on closeness to family and friends. My close relatives stayed outside all day the ICU to be able to glance at my grandmother from a distance and hear her calling out for them. This was a traumatic experience, particularly when they heard the expressions “Saaket” or “Khafeh Sho” (“Shut up”) from my grandmother when she was undergoing procedures. My grandmother loved to communicate and form bonds with people, and appreciated having her close ones hold her hand during medical procedures. During all of her stay, her arm was outstretched to hold someone’s hand, but there was no one there and her hands were eventually fastened to the bed.

The course of the disease was unpredictable, and ultimately a poor prognosis was given, i.e. the chances of my grandmother’s survival diminished. During this period, interactions with nurses and doctors were punctuated by disregard and dismissal. For example, when one relative noticed that the nebulisers were inserted in my grandmother’s eyes rather than her nostrils (where they belong), this fact was dismissed with a “oh, her oxygen was high”. There were a few good doctors and nurses, but they were conspicuously outnumbered by the poor ones. When my cousin objected against intubation (insertion of a tube into the lungs) for the last few hours of life, instead of explaining the rationale, the doctor shouted at her “Do you want to kill your grandmother?” It took a lot of pressure to prevent the ICU team from doing a completely needless invasive procedure (kidney dialysis) with just a few hours of life remaining and kidney test results that had been unchanged for years.

Nevertheless, simple measures such as giving my grandmother something to drink were considered a luxury. When my grandmother was deteriorating, no provision was made to allow her to be close to loved ones. She and her family did not want her to be in an intensive care unit, and not only was she kept there against her will during the treatment phase, but she was kept there when she was about to die.

I asked my cousin to connect her to me by video call before her death during the one-hour visiting period. Her eyes were initially closed, but as soon as she heard my voice, they opened wide. Her mouth was entirely bandaged apart from a tube coming out of it, but I could see the outline of her lips moving briskly underneath all the bandages. She wanted to say something, and had never been stopped from talking to me before. She started vigorously shaking her tied arms in an attempt to communicate with me, but then realized her efforts were fruitless and her eyes started welling up with tears. In all my years of knowing her, I don’t remember her crying. She died just over an hour later, curtains drawn and no loved ones around her.

Nothing could have prepared me for this image, which remains traumatically imprinted in my mind. It will be a memory I will never forget. I keep wondering what she wanted to say – was she saying goodbye to me, or asking me to convey a message: to look after my mother, my brother, or help someone desperately in need? Finding the answer to this is a futile quest, but it is a rumination that will, sadly, remain.

Dying alone, with family not allowed to be with her is one thing, but my family were also denied the chance to see her after death. Only after begging were they able to get a brief glimpse of her in the corridor prior to entering the mortuary after challenging the comment, “She’s gone, why don’t you just go now”.

Passing away is an inevitable part of people’s existence, but the environment for this chapter of life is so important. As a doctor who works in the United Kingdom’s National Health Service, I have been well-versed in the importance of dignity in death. But in Iran, a country whose polymaths helped define the early principles of bioethics, it is unfathomable that core bioethical values were denied for such a sweet soul as my grandmother, and potentially for others. These principles include Non-Maleficence — not performing unnecessary procedures that serve just to prolong the patient’s life and often cause distress and pain to the patient — and Autonomy – respect for the desires and values of the patient, including how they want to be treated and how they want to die.

In my grandmother’s case this was with her family around her and without fruitless procedures. Denying someone’s spirit and character so manifestly in their final days and hours is criminal. These sentiments were shared by my family, and indeed being able to spend time with a loved one before and after their death to say goodbye should be a basic right, rather than just being able to observe this sorrowful moment from a distance. It should not be such as Sisyphean effort to spend time with a loved one and find out what happened during a hospital stay, hampered at all stages by a lack of sympathy and empathy alongside a degree of ageism against someone who is perceived as just a bed number rather than a human being.

A photo of Nima Ghadiri’s grandmother holding a pomegranate on Shab-e Yalda (An ancient Persian festival commemorating the Winter Solstice), three weeks before she died

I remain always indebted to my grandmother for looking after me as a child in the United Kingdom and being someone I could talk to and share my life with for so much of my existence. Even at her age, she had the spirit of someone many decades younger, was full of life and brought joy to so many. She shared all she had with charity and those less fortunate than herself. Strangers often commented on how sweet and bright she was and I used to talk to her about films, technology and current affairs. She remained a fountain of wisdom and I could not have dreamt of a better grandmother. Her grandchildren remain traumatized by the manner in which she has gone, and the suffering and abuse that she endured. Because she was such a positive and life-loving soul, I do not want the final page of her life to be negative. I am not sure how yet, but I know that I would be happy if the discussion arises for Iran, the country of Avicenna, Razi and numerous others, to re-discover what care, particularly at the end of life, means. Perhaps in the future, I will open a palliative care institute in her name.

Share

Not Just Games – How Virtual Reality Will Heal And Teach In 2017 And Beyond

Source: http://www.huffingtonpost.co.uk/nima-ghadiri/not-just-games-how-virtua_b_13865544.html?

MARCO_PIUNTI VIA GETTY IMAGES
 

tech for good

Home Virtual Reality has seemingly been looming on the horizon for three decades, ever since VPL Research founder Jaron Lanier announced the EyePhone device which retailed for just short of $10,000. But motion sickness, and the astronomical price, pushed the technology into the wilderness.

2016-12-27-1482862519-6118231-20142F042F142F032FEyephoneVPL.99ebb.jpg
The VPL EyePhone from 1989. Image: VPL Research https://vrwiki.wikispaces.com/

This year, home Virtual Reality re-entered mainstream consciousness with no less than five new devices under the Christmas tree, ranging from premium technology room-scale experiences like HTC Vive (think Star Trek’s Holodeck) to more accessible smartphone-based products such as Google Daydream and Samsung Gear, and a price range from £12 (Google Cardboard) to £689 (HTC Vive). Facebook founder Mark Zuckerberg calls it:

The next major computing platform that will come after mobile

2016-12-27-1482859897-796878-oculus_touch.jpg
The Oculus Rift headset with the Oculus Touch hand controllers. Image: Oculus VR https://www3.oculus.com/en-us/rift/

With these new devices, it will be interesting to observe which one finds most favour in 2017: Will Facebook-owned Oculus Rift make use of its technology and social media real-estate to market its pioneering product to the masses, or will Sony’s Playstation VR deliver the fun games to make VR a genuine prospect for a world of console gamers? Will people prefer affordability and portability with Samsung’s Gear over the need for a tricky room-based setup with the HTC Vive, arguably the most immersive and wow device of all?

At its core, Virtual Reality remains a gaming technology. However all of the various devices are equally adept at providing amazing storytelling experiences, 360° music videos, or plunging the user into historic galleries and exotic worlds. Entering a famous Vincent Van Gogh painting in Borrowed Light Studios’ “The Night Café” is, in equal measures, beautiful and surreal.

2016-12-27-1482857649-8449973-nightcafe01.jpg
Borrowed Light Studios’ “The Night Café is a unique experience allowing you to walk around a Café inspired by the famous painting from Van Gogh. Image: Borrowed Light Studios http://www.borrowedlightvr.com/the-night-cafe/

As the user base is small, the market for “Triple A” gaming titles lasting hundreds of hours is minimal. The fortunate side-effect is a booming market for short experiences and quirkier games such as “Accounting” from the Crows Crows Crows Studio which are both enjoyable and affordable. But there is still the odd zombie shooter, and zombies jumping up on you in virtual reality is very, very frightening. Beyond slaughtering undead hordes, are there more constructive applications of virtual reality technology? Yes, and the possibilities are endless….

Education and Training

Virtual Reality has always been a prospect for training in professions where peoples’ lives and health are at stake. Simulators are already used to train pilots dealing with unexpected events, but the opportunity for more convenient home practice can only be a positive development.

Medical professionals can learn interventions for the operating room, emergency department or clinic, both challenging and more routine. The Miami Children’s Hospital, for example, is developing medical instructional software for basic procedures such as nasogastric tube insertion and starting an IV drip, with the aim of educating doctors as well as patients. Medical and nursing students can also learn their subject with more context than a book, for example by interacting with a “live” anatomical dissection table.

2016-12-28-1482885493-6376327-maxresdefault.jpg
Organon VR Anatomy on the Oculus Rift makes learning anatomical structures more vivid and helps the understanding of spatial relationship between them. Image: Author’s Own http://www.3dorganon.com/site/

Over the past decade, there has been an explosion in the use of simulation medicine, particularly in cardiopulmonary resuscitation and life support where it provides a much more realistic way of portraying a scenario than a mannequin and actors, and where it provides more for assessment: Gestures, eye movements, metrics and real-time feedback are more useful assessors of these skills than a written examination.

For surgical training, VR is increasingly being proposed for the learning of minimally-invasive surgical procedures. It allows a realistic operating room environment, including interaction with colleagues, but in a safer environment where mistakes are not going to cause any harm. Bimanual tool handles and force feedback can mimic surgical tools – although it will take a while for this to be accurate enough to use at home, to the level of devices such as the NeuroTouch – a commercially available brain surgery simulator. New developments in tracking technologies such as Microsoft’s Handpose (which records complex hand movements) may add more intricacy to VR surgery training.

Virtual Reality is not limited to learning practical skills. Even attributes like empathy can be augmented through the headsets. Embodied Labs has designed a VR program called “We Are Alfred” which gives medical students, many of whom are in their twenties, an insight into experiencing the life of a 74 year-old man with audiological and visual problems. Providing the experience and learning the patient’s perspective can be invaluable in how the students develop as medical professionals.

2016-12-28-1482885605-2550107-family1screencap.png
Embodied Labs’ “We Are Alfred” allows students to experience the life of a 74 year-old with visual and audiological problems. Image: Embodied Labs http://www.embodiedlabs.com/

The complete audiovisual immersion provided by Virtual Reality can conjure or awaken emotions which users may not have been aware of. This has been used to good effect in journalism, such as The Guardian’s award-winning 6×9 experience of solitary confinement and film-maker Nonny de la Pena’s Project Syria which inserts the viewer into the plight of Syrian child refugees.

The founder of Oculus VR Palmer Luckey, affirms that this immersive power of Virtual Reality can be a medium for social change, through its ability to put you in places “in a much more real way”. Virtual reality campaigns following the 2015 Nepal Earthquake and The Dolphin Project (Both Huffington Post’s RYOT) have had a palpable impact on awareness. A recent AT&T campaign in the United States sees the user driving a car through residential neighbourhoods and ending up causing a tragedy whilst texting. The feedback following this emotive exercise showed that people who had the VR experience consciously removed their phones before driving.

New ways of working

Meetings and conferences are set to transform from the often vaguely distant videoconference to VR meetings. The social games and experiences on this years’ devices have highlighted how much more connected people feel when they are in a shared VR space than a 2-dimensional screen. Be it event/product marketing, site inspections, interviews or negotiations, the presence and interactivity afforded by Virtual Reality will see it slowly replace Skype as “the next best thing” to physical contact.

In the field of surgery, earlier this year, Dr Shafi Ahmed performed bowel surgery which was live-streamed for anyone to “jump into the operating theatre”. With improvements in haptic devices, performing remote surgery may become a reality sooner than we would have expected.

2016-12-28-1482885656-53530-MG_1683Reduced1030x687.jpg
Surgery streamed in Virtual Reality. Image: Medical Realities http://www.medicalrealities.com/

Tests and Therapies

Diagnosis of illness lends itself to Virtual Reality, particular for conditions in which visual assessment is important such as Parkinson’s Disease and Multiple Sclerosis. A test developed by Tomsk Polytechnic and Siberian State Universities in Russia uses cheap headsets and Microsoft Kinect sensors to monitor people’s movements in virtual environments. Neurologists are then able to make earlier diagnoses and start rehabilitation. Indeed, the ability to see a doctor face-to-face from distance was one of the motivations for Facebook’s Mark Zuckerberg when he purchased the Oculus VR company.

2016-12-28-1482885883-7519024-30329ba99e4e7_680_382.jpg
Virtual Reality being used to diagnose Parkinson’s Disease. Image: Tomsk Polytechnic University http://tpu.ru/en/news-events/914/

Oculus founder Palmar Luckey first identified the potential of VR in rehabilitation whilst working with a team of therapists at the University of Southern California, helping military veterans who suffered from post-traumatic stress disorder by providing exposure therapy. This involved recreating battlefield episodes but allowing the guidance and support of a trained therapist to help identify and address the psychological trigger for illness. He said that this was when he first identified that virtual reality can be an important new therapy method:

It can make a significant difference in people’s lives

Virtual reality has been shown to be beneficial in rehabilitation after strokes, particularly in improving upper limb strength and in re-learning activities of daily living. There have also been potential benefits observed in helping motor learning in children with cerebral palsy. It can become a key weapon in the rehabilitation arsenal for physiotherapists and occupational therapists over the next decade, changing the face of rehabilitation for all kinds of diseases.

Virtual Reality is no longer in its infancy. It has hit the mainstream and is here to stay. Let’s use it to improve our world.

Share

Mark Kermode’s Top 10 Films of 2016

Dr Kermode’s Top 10 films are a highlight of the year for many Wittertainment fans. As usual, there is the odd smattering of unjust criticism, with some saying there should be a separate “top 10 arthouse” and a “top 10 multiplex” list. No, no there shouldn’t.

People have watched and listened to Mark Kermode for different reasons over the years, and they are all equally valid.

Some people just listen for the infectious banter between him and Simon Mayo, and are perhaps less interested in going to the cinema, that is fine.

Others want to know which of the week’s big releases is worth seeing from people whose opinion they can generally trust, that is also fine.

Others want to hear a good old Kermodian rant, also absolutely fine.

But some people have always tuned in to hear his opinions about films which are less well-marketed but no less good than action-packed multiplex offerings. He has been doing this for decades. I personally think there are enough places which review and advertise big releases and I know enough about them from reading a magazine or a paper.

I go to Mark to get his thoughts on films which I would not have otherwise heard of, but can be more enjoyable and impacting than Return of the Nostalgia Fest VIII. I don’t think there should be two separate lists. He is a film critic, and it is right that this is his top 10 list.

Thank you Mark Kermode. 

Share

Doctors With Mental Illness – Time For A Change

Mental Illness, particularly in the workplace, remains a stigma. It is time for attitudes toward mental illness to change, and we cannot ignore the doctors who suffer.

A push for mental health

 

https://www.gov.uk/government/news/prime-minister-pledges-a-revolution-in-mental-health-treatment

Earlier this year, former prime minister David Cameron pledged a mental health revolution of almost a billion pounds. Whilst this proposed outlay is welcome, it must be matched by a proactive change to the stigma attached to mental health in media, the workplace, and at home.

Mental health and doctors

 

Professor Debbie Cohen of Cardiff surveyed almost 2000 doctors this year and found that 60% had experienced mental illness in the UK (82% in England alone). In the general population, the rate is 28%. Doctors experience the same range of problems as everyone else, but the cocktail of work, exams, academia, family and relationships lowers the threshold for illness. Many have perfectionist traits which lead to doubt and self-criticism when things go wrong, leading to a self-perpetuating cycle.

Worryingly, more young doctors are being diagnosed with mental health problems. There may not be a pre-existing illness: After 25-year old junior doctor Rose Polge tragically committed suicide in February 2016, her family described a young lady with an infectious enthusiasm for life and no previous mental health problems, but long hours and work-related anxiety contributed to her decision to end her life.

Extreme stress early on

 

Doctors are as susceptible to mental problems as the general population. However, particularly early on in their careers, they face a unique combination of challenges. These include the need to develop countless skills within a short period (for which university education can never fully prepare) and service burdens in a chronically under-resourced environment, only more challenging for those with family or caring roles. Early junior doctors shifts are usually incompatible with outside interests, and losing day-to-day balance can unearth mental health struggles.

Doctors face a societal and professional weight compelling them to ignore difficulties. A cultural idiosyncracy of willing martyrdom exists, in which doctors feel it their role to attend work regardless of fitness. This is less prevalent in other countries, for example Australia and New Zealand, where attitudes towards sickness are more rational.

The stigma

 

Fewer professions stigmatise mental health disorders more prominently than medicine. In the Cardiff study, 41% of doctors with mental illness said that they would not disclose it. Doctors are not supposed to get ill, and seeking help is weakness which imperils trust in the practitioner’s ability to do his/her job. This featured in the heartbreaking suicide of GP Wendy Potts in November 2015 after a patient read her blog on living with Bipolar Disorder and complained to the surgery.

Some doctors find changing roles from helper to patient unnatural, others find treatment from a colleague embarrassing. Often the prevailing fear is of a career-threatening “black mark” on a permanent record: Doctors must labour through appraisals and assessments, and competition for jobs and training posts can be ferocious.

A culture of fear

 

A 2008 Department of Health report said:

“Doctors may fear that acknowledging the need for help will damage their career prospects or lead to scrutiny of their fitness to practise”

This happened in the case of Dr Dakhsha Emson, who killed herself and her baby during a relapse of bipolar disorder in 2000. A stirring tribute from her husband reflected a talented doctor and a successful medical career. However, worry of colleagues and patients finding out when she was applying for consultant posts led to a lack of treatment. The report highlighted a:

“Widespread stigma against mental illness in the NHS”

This stigma can arise as early as medical school, fostered by a triad of competitiveness, fear and uncertainty. Students sometimes receive conflicting information about mental health, and may fear disclosing illness. Pastoral care can be arbitrary, often with little demarcation between disciplinary roles and support roles. Some universities have introduced “fitness to practice” hearings to monitor student behaviour, fostering a culture of castigation.

For some doctors, this culture is epitomised by the General Medical Council (GMC), whose role is to protect the health and safety of the public. All doctors with mental health issues are required to notify regarding their problems, which are investigated under the same procedures as misconduct and poor performance. Subsequent fitness to practise processes are required to be declared on application forms for jobs. These can sometimes be beneficial, for example recommending support. However, often they are described as harrowing experiences, and the duress of investigation affects doctors personally and professionally.

The toll can sometimes be too much, between 2005 and 2013 there were 28 reported cases of suicides following investigation. One of those was GP Belinda Brewe, describing the process:

“threatening and isolating”, eroding “self-confidence and self-belief”.

What’s needed

 
  • The NHS needs continued active campaigns to encourage openness, tackle stigma and promote healthy working practice.
  • Medical schools should be proactive in support and awareness: counselling services, pastoral care positions and peer support.
  • The insight that doctors with mental health problems have when treating their patients should be valued.

A doctor who has a mental health disorder might put his patient at risk, but a doctor hiding or in denial because of a culture of fear will put his patient at risk.

Support

  • http://www.php.nhs.uk NHS Practitioner Health Programme, free and confidential health service allowing doctors to self-refer.

Source: http://www.huffingtonpost.co.uk/nima-ghadiri/doctors-with-mental-healt_b_12760924.html

Share

Nigel Farage and UKIP’s Voting History at the EU Parliament

Former stockbroker Nigel Farage has been the figurehead for Britain’s impending exit from the European Union.  To analyse his moral compass, it helps to look at his voting history:

2016

EU Vote 2667 on 25/2/16
‘Draft Bill on automatic exchange of financial account information’.
Ukip Vote: “Against”, protecting Tax Dodgers again.

EU Vote 2748 on 25/2/16
‘Humanitarian situation in Yemen’.
Ukip Vote: “Abstained/No Show”, Ukip seem to support bombing of civilians.

EU Vote 2664 on 4/2/16
‘Systematic Mass Murder of Religeous Minorities by ISIS’.
Ukip Vote: “Against”, trying to block discussion of the matter.

EU Vote 2650 on 3/2/16
‘Stategy on Gender equality and women’s rights’.
Ukip Vote: “Against”, displaying their 1950’s misogyny again.

EU Vote 2565 on 21/1/16
‘Mutual defence clause (Article 42(7) TEU)’.
Ukip Vote: “Against”, putting their Politics over our National Defense needs.

EU Vote 2545 on 20/1/16
‘Consumer Protection – Appliances burning gaseous fuels’.
Ukip Vote: “Against”, seems they really don’t like new Safety Legislation designed to protect us.

EU Vote 2544 on 20/1/16
‘Consumer Protection : Personal protective equipment’.
Ukip Vote: “Against”, seems they don’t like new Safety Legislation designed to protect us.

EU Vote 2543 on 20/1/16
‘Presumption of innocence and right to be present at trial in criminal proceedings’.
Ukip Vote: “Abstained”, seems they don’t want any of us getting a fair trial anywhere.

EU Vote 2531 on 19/1/16’Skills policies for fighting youth unemployment’.
Ukip Vote: “Against”, seems they don’t want Young People to have jobs.

EU Vote 2530 on 19/1/16
‘Hurdles to European female entrepreneurship’.
Ukip Vote: “Against”, seems they don’t like Women starting their own businesses.
2015

EU Vote 2308 on 2/12/15
‘Eu-Liechtenstein Agreement, Exchange of Financial Information’.
Ukip Vote: “Against”, protecting Tax Dodgers.

EU Vote 2265 on 26/11/15
‘Freedom Of Expression In Bangladesh’.
Ukip Vote: “Abstained”, failing to Defend Free Speech.

EU Vote 2013 on 29/10/15
‘Transparency Of Securities Financing Transactions’. Ukip: ‘Against’.
Ukip Vote: “Against”, protecting Tax Dodgers.

EU Vote 1756 on 27/10/15
‘Mandatory Automatic Exchange Of Information In Taxation’.
Ukip Vote: “Abstained”, protecting Tax Dodgers.

Share