The popular internet meme First World Problems makes often bitingly ironic statements about things which are really irritating and sometimes infuriating, but only from a position of self-involved privilege. Without being ironic or satirical, here are three problems which I see regularly in my professional life that are due to the success of first world medicine. If you overtake society’s readiness to deal with new problems, there can be heartbreaking results.
1. Ageing with a disability
People with serious spinal cord injuries, traumatic brain injuries and major developmental disabilities never used to survive into middle age. Life expectancy for Down Syndrome individuals is a good example. People born with this condition live twice as long now as they did in the 1980s.Survivors of spinal cord injury similarly have vastly improved survival rates and quality of life now compared to the 1970s and earlier periods. More and more disabled adults are getting older with their disability and their carers are ageing too.
Because the main carers of highly disabled children and adolescents are their parents, health care professionals are seeing more older adults with caring responsibilities for disabled middle-aged children. I cared for a lady who discharged herself very early from the rehabilitation ward following her fractured femur when she heard her 55 year old disabled son was not doing well in respite care. She herself was not going well, but she felt that even coping poorly herself was preferable to her son’s needs not being met. For many of these individuals who are ageing with a disability, their usual means of maintaining their independence are eroded by ‘wear and tear’ conditions like tendon injuries and arthritis. They experience a double blow to their ability to cope, and they may go from fairly independent in their own place to nursing home level care needs in a few months.
2. Being the parent of a very premature baby
Expectant parents want nothing but the best for their children, and do all they can to ensure it. Despite all the precautions that parents can take, premature and unwell babies are still being born, and they need very invasive and prolonged medical intervention to survive. When this happens, all of the usual parental expectations are out the window, and a whole new perspective is needed.
The emotional turmoil that some new mothers suffer trying to recover from a birth, while also trying to comprehend what is happening to their newborn child in ICU can hardly be imagined. The days and nights turn into weeks of slow progress and complications. Some of the complications are inevitable due to the child’s condition, but many are due to the care they receive, including oxygen toxicity, tracheal damage from breathing tubes, nasal and throat injuries from feeding tubes. It is a terribly helpless experience, to watch your tiny child through the perspex, without being able to hold, comfort and nurture him.
As younger and sicker babies survive, the stories of these extraordinary parents become almost commonplace, yet each is a triumph of hope, tenacity and love which those in the world without access to these resources will never know.
3. Hanging on at home
The recently announced Aged Care reform package shows that politicians and bureaucrats alike are very well aware of the ageing population. They are also incredibly desperate to avoid large numbers of institutionalised elderly people in Government-funded care. The orthopaedic rehabilitation ward on which I work helps to provide an environment where people can try to recover to their previous level of ability, but the sad fact of the matter is that most of those over 75 years old who have a major fracture do not achieve their previous level of independence. A significant number of them were barely managing. Their families may demand that we ‘stop them going home’ because they are worried sick about their mum, dad, or auntie and haven’t been able to persuade them to accept help or move into more secure accommodation.
In an audit of our patients I did a couple of years ago, far and away the biggest contributing factor to very long lengths of stay in the ward was looking after people who couldn’t bring themselves or their families to make a decision not to return home. Putting extra social work time into these patients did not significantly change this, because the ultimate decision had not gotten easier. We now have the Transition Care Program, which is specifically set up to provide safe and appropriate accommodation for elders who are at this threshold, and who need more time to properly come to terms with choosing whether to up sticks and move or fight on in their own home.
Modern medical care and a first-world lifestyle are adding years to life and saving lives that would otherwise be cut short. It cannot foresee what those years will be like. Health professionals both in hospitals and the community are dealing with incredibly complex emotional and social situations like these in rapidly increasing numbers.
Are we wrong to find them agonising and difficult dilemmas?
I don’t think so. Yes, we are privileged to have access to the medicine which makes them happen, but the human struggle is written in all languages and by all people. The details may vary, but the solutions to these problems all require compassion, communication, social justice and deep thinking. Sometimes the answers can be as complicated and confusing as the questions.