Value of Life – Are we all worth the same?
Philip is an advocate for barrier-free accessibility, equality, and inclusiveness for persons with disabilities. He is involved in several initiatives in the NHS, and with various disability and accessibility advisory groups.
He has become a regular contributor to Independent Living, and is active on Twitter @phandi(link to Twitter will open in a new browser window)
Life and death decisions
We all have to make decisions in life. Many are simple, daily decisions. But how do we decide which option to choose when no option is risk-free?
In 1967, philosopher Philippa Foot established what became known as The Trolley (or tram) Dilemma. You happen to be by a lever that could steer a runaway trolley away from killing five people, to killing one person. Maybe you would choose the one to die.
But, what if that person was pregnant, or elderly, or obese, or in a wheelchair? Or the five were older manual labourers? No matter what choices you are posed, they all present ethical issues.
The one thing these decisions have in common, is prioritising and saving lives, but not every life.
Putting a value on human life
For decades, L’Oréal used the slogan ‘Because You’re (or I’m) Worth it’, entreating the consumer to pay the premium for their hair product. It is the subject of countless memes, substituting the woman with flowing, silky hair. The slogan’s success is in appealing to the consumer to consider their self-worth, and enhance self-esteem.
But what are we worth? Are we all worth the same?
In the UK, a former Supreme Court judge recently caused controversy during a televised debate, telling a woman with stage 4 bowel cancer that her life was ‘less valuable’ than others. He was arguing lives do not have equal value, as some people are more important, or contribute more to society than others.
Across society, many condemned his comments, asserting you cannot put a value on different people’s lives. However, that is exactly what governments do when assessing policies, comparing the economic and human cost to expected benefit of alternative policy decisions.
There is an internationally recognised formula for measuring cost, and quality of potential life expected from different treatments, or interventions, a patient could have. The formula is known as a QALY, short for calculating a quality adjusted life year.
During the Coronavirus pandemic, physicians and governments have had to prioritise lives in considering ethical questions, such as: Who should have access to a limited supply of ventilators? What priority order should the population be vaccinated?
For doctors and nurses, prioritising some Covid patients is counter to their guiding principle of caring equally for all, the foundation for trust the public has in the medical profession. Making these decisions has added to the stress and exhaustion of working long hours in the pandemic.
You before me?
In 1997, audiences flocked to see the epic film, Titanic. Undoubtedly, the film’s teenage love story of Jack and Rose appealed to many, propelling Leonardo DiCaprio and Kate Winslet to global stardom.
The film successfully takes you on the fateful voyage in 1912, admiring the wonder of the engineering enabling such a huge, glamorous, luxury liner to float. Until it hit the iceberg, of course.
When Titanic started slowly sinking, everyone knew they would die, unless they get on a lifeboat. Each person had time to consider what action to take.
Knowing there were not enough lifeboats for all the passengers, would you stand back and allow others to board the lifeboats before you?
What would guide your decision? Women and children first?
I suspect I would be abandoned in my wheelchair, either because of the time it would take to get me in a lifeboat, or because most would consider my life had little value.
Respecting right to life
Last year, many months after I went into lockdown, I got a phone call from my doctor’s surgery. My surprise at receiving the call, having had little or no contact with the medical profession that supported me prior to Covid, turned to amazement when told the reason for the call.
Had I completed a respect form.
On probing, I realised the call was about my end of life wishes. I discovered ReSPECT (Recommended Summary Plan for Emergency Treatment and Care) had replaced what was known as the DNAR (Do Not Attempt Resuscitation) form, I had previously completed. The tone of that call left me feeling I was being written off.
Sometime ago, following a sensitive discussion with my hospice palliative consultant, I stated my wish not to attempt cardiopulmonary resuscitation (CPR) if I had cardiac or respiratory arrest. It is not a death wish, but recognition of the unlikelihood of surviving an attempted CPR, or a level of recovery leaving me with rib fracture, damage to internal organs, and brain damage.
The DNAR does not imply my agreement to other clinically appropriate treatments being withdrawn or withheld. I want to live as long as possible.
Covid has been catastrophic for people with a disability. We make up some 15% of the population, but 60% of fatalities last year.
Our right to life has been qualified, possibly by using the QALY formula. Apart from a concerted effort to ensure ‘Do Not Resuscitate’ orders are on our records, social care funding has been cut and, unless classified clinically extremely vulnerable, we are not a priority for vaccination.
Frustrations and feelings of vulnerability come with disability and long-term illness. I wrote Storm Inside to express how vulnerability can play on my mind at night, amplified in Covid isolation by the pandemic storm.
There’s a raging storm, inside
Thunder rumbling, in my head
Inner turmoil, amplified
Anxious, for what lies ahead
Lying supine, on my back
Legs and arms, immobilised
Praying, my morale won’t crack
Fears, frustrations, crystallised
May the night, bring me balm
To still my anxiety
Peacefulness, strength to calm
It is as if the captain and crew on mother earth, have abandoned those with disability to the pandemic storms without a Covid-free lifeboat.
We are all valid
With the breaking of dawn, I put aside my fears, determined to make the most of each new day. All I ask for is no extra hurdles and impediments to be put in my way.
Some may regard me as an invalid, a horrible word. But, as I have long quipped ‘I am not invalid’.
I may not be able to care for myself, being dependent on my carer. I may not be able to make a difference every day, however that may be measured. But, I have a valid voice, and want to live.
With that voice, I make this appeal to pandemic policy decision makers all over the world.
You have a responsibility to protect your people from the storm with appropriate measures, culminating with a successful vaccination programme.
In the meantime, please don’t direct the path of the runaway pandemic to hit hardest the elderly, vulnerable, most disadvantaged, and those with disability.
We have as much a right to life as you and everyone else. Or do we?
What choices would you make?
When a policy decision effects categories of nameless people, it is easy to feel distant from its impact. In reality, we are all affected in some way.
In a Comment below the article, please share your thoughts on this article and any reflections on these questions:
Do you think everyone should have the same right to life?
How would you feel if your loved ones, or others close to you, were considered of little use and valued less by others?
Would you be happy to put the disadvantaged before you in receiving treatment or the vaccine?
Where are you in the vaccination priority order?
There is good news, better days will come, the pandemic storm will abate.
As Johnny Nash sang in his uplifting song, I can see clearly now the rain is gone
Oh, yes I can make it now the pain is gone.
All of the bad feelings have disappeared.
Here is that rainbow I’ve been praying for.
It’s gonna be a bright (bright)
Bright (bright) sunshiny day.
This version filmed and recorded remotely during the pandemic by artists from around the world, gives us a taste of the joy we will feel when we have overcome the obstacles, and can share bright, sunshiny days.
I guarantee it will put a smile on your face, and give you a fillip.
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Further reading and resources
In between articles on Independent Living, you can keep up-to-date with Philip’s activities by following him on Twitter @phandi (external link will open in a new browser window)
You can learn something of Philip’s condition, and determination to live as full a life as possible in this article