A guest writer reflects on the inability of the health system to see the good in patients. The contributor wishes to remain anonymous.
In a few weeks, I’m donating a kidney to a stranger. This strange idea came to me through fateful events and then slowly grew into conviction. I try to live a life of generosity and I’m blessed with perfect good health, even in my later years. Why should I not share that good fortune with another?
For a patient on renal dialysis, receiving a kidney donation is life-transforming: from chronic ill health, fatigue, and twenty-hours-a-week tethered to a machine, to perfect good health. More than 90% of donated kidneys are still working after twenty years. The life-expectancy of the recipient is doubled.
In my country, there’s a chronic shortage of organ donors. Less than 20% of those on the waiting list for transplantation are lucky enough to get a kidney each year.
The costs to the donor are small. I have a 1 in 3,500 chance of dying, a slight chance of minor surgical complications, a marginal increase in my tiny lifetime risk of kidney failure, and I have to endure the pain and discomfort of surgery and post-op recovery.
We don’t get many opportunities in life to make such a transformative difference to another human being. With the support of my partner and family members, it became an easy decision to make this gift of life. Many other people will benefit from my action. Kidney dialysis is very expensive. My donating a kidney will potentially save the health service more than $1million over the next twenty years, allowing many other patients to be treated.
The clinical workup for kidney donation is thorough. In addition to multiple scans, x-rays and blood tests, I had extensive consultations with a kidney doctor, a transplant surgeon, the transplant coordinator, and a social worker. Then came the final unexpected step: a psychiatric assessment. When the appointment letter came, I thought it must be a mistake.
Yes, I expected a psychological assessment. I understood the transplant team had an ethical duty of care to any potential organ donor: to understand my motivation for organ donation; to make sure I was not under duress; to check that I had the capacity to understand the risks and benefits of my action; to confirm that I had the resilience to cope with potential complications or, in the worst case, a transplant failure. But this was a two-hour appointment with a psychiatrist, not a psychologist.
My clinical charts already documented that I am perfectly healthy; that I take no medication; I do not smoke, drink to excess, or take recreational drugs. I have never been in hospital. I am happily married and have a fulfilling professional career.
I thought, ‘What would a psychiatrist know about altruism and compassion? Is there a DSM code for generosity?’
True, the psychiatrist wanted to know about my motivation for organ donation. But at no time was there an acknowledgement that my planned act was a gift of unusual generosity or courage. Rather the focus was on questions about my psychiatric history: any episodes of depression, or manic-depressive disorder, or anxiety, or panic attacks, or obsessive-compulsive behavior? How many family members had a history of mental illness? Was I able to go a day without alcohol? Had I ever sought counseling or psychotherapy? The questions went on for more than an hour. Maybe the psychiatrist thought that anyone who decides to donate a kidney to a stranger is crazy?
The conclusion of the appointment was a negative statement that ‘there are no major problems.’ I left the clinic feeling sullied, diminished and annoyed.
In the days after, I reflected that my experience symbolizes what is wrong with our entire health system – a relentless focus on what is wrong and a complete blindness to what is good and strong: the inherent capacities of people to be resilient, to heal themselves, to maintain good health.
I thought how the appointment could have been a celebration of my strengths, rather than a list of risks. I fantasised an appointment with a psychologist who knew something of the science of happiness and flourishing. How different my experience would have been if the consultation had started, ‘Wow! This is such an amazing gift you are offering. I imagine you must have a lot of character strengths. Tell me how you came to this decision and what values support your action.’
Then I could have told her about all the good things in my life, how I have coped with adversity and crisis, how my happiness arises from a deep contentment rather than external life circumstances, the deep pleasure I find in giving. I could have been a person, not just a patient.
I thought, ‘What if every medical appointment began this way?’ How transforming could it be if all doctors asked, not ‘What’s the matter?’ but ‘What matters to you?’ Imagine if your health record was actually a health record, rather than a catalogue of illness. Imagine if your every health challenge was seen in the context of all the health strengths and assets you possess, not just in terms of pathology and diagnosis?
Somehow, I don’t see the practice of medicine changing in a hurry. Maybe it’s patients that need to change. The next time your doctor asks you, ‘What’s the problem?’ you could reply, ‘Doctor, I’m worried that you are depressed: you only ever ask me what’s wrong. Did it ever occur to you I might have my own capacity to deal with health challenges and I just want you partnering with me, as a whole person, not just a patient with a diagnosis?’
Of course, your doctor might just make another diagnosis: ‘Difficult patient’!