First published in Australian Doctor in 2008.
I was an accident waiting to happen as a child. Before the age of eight I had clocked up a dozen hospital emergency visits and over 50 stitches. So, it wasn’t a surprise when my eldest child needed his first sutures just after his second birthday. The surprising part was how scarred I was by the experience.
Our family was living overseas when our son toddled, chin-first, into the steely modern art structure in the lobby of our apartment building. He sliced open the skin under his lip, requiring several stitches. I was not allowed into the treatment room to comfort him, despite my strong protests and his obvious panic. Neither the planned procedure nor the relevant policies about parent involvement were explained, leaving me disempowered and my son traumatised.
Several years later we visited a different doctor with a different child in a different country. When she explained that a blood test was necessary we warned her that this son, Oliver, had a tendency to react strongly to any medical procedure. Just as Oliver began to wail and flail the doctor quietly slipped from the room. She returned clutching a small bottle in her hand and, turning to my husband, said gently “Okay Dad, your job is to blow as many bubbles as you can over your son’s head.” Dad blew little bubbles, big bubbles, all types of bubbles, and Oliver never even noticed the needle slipping cleanly under the skin.
What was the difference? Some of it, certainly, was communication. Some was policy. Much of it was culture. We may need to ask whether our medical culture is geared towards the needs of the patient and family or more directed to those of the medical community.
The principles of family-centred care — focusing care on the specific needs of each patient and family in partnership with the medical team — can now be heard from the corridors of our hospitals to the corridors of power in Canberra, as medical and political leaders consider policies aimed at encouraging a culture change.
The Institute for Family-Centered Care in the U.S. describes the concept as a way of providing healthcare for patients and families that relies on the core concepts of dignity and respect; information sharing; patient and family member participation in care and decision-making; and collaboration among caregivers, patients, and family members. The concept is also known as patient-centred care.
Dr Atul Gawande, an American surgeon and writer for The New Yorker magazine, tells the story of observing a respiratory physician with a teenage cystic fibrosis patient. It turned out that the 17-year-old girl had a new boyfriend, a part-time job and “no time” for doing her nebulisers and physiotherapy. Her doctor only discovered all of this through a slow and thorough conversation with the girl. He then negotiated a solution with her — one that would maintain her health adequately but, importantly, one that was also flexible enough that she was likely to maintain it after leaving his office. This could be what Gawande describes elsewhere as “real medicine: untidy, human but practiced carefully and conscientiously.” Practising good medicine may mean shaping it to work in the lives of real people.
Of course, many healthcare workers across the country already practise family-centred care everyday when they listen respectfully, involve patients in decision-making or simply organise a translator.
But is that enough? And how much is too much for patients and families to ask or expect? For example, can patients expect to be notified — before arrival —when their GP is running significantly behind schedule? Could they be offered copies of correspondence relating to their medical condition, enabling them to play a more active and informed role in their own care? And, going a step further, do patients and families have a part to play not only in decision-making about their own circumstances, but in healthcare policy-making as a whole?
Blackburn, Victoria GP Janice Kreltszheim believes that aspects of family and patient centred care slot easily into her work. She feels that having long-term relationships with patients gives her “the ability to tailor management to individuals; some patients and families want more involvement than others. Some are happy with the traditional medical model while others really need to be part of the management process”.
Importantly, although relatively little research has been done, there is evidence that patient-centred communication correlates positively with patient satisfaction, adherence and improved health outcomes. In one study that investigated expert and patient observations of clinical experiences, the patient’s own perceptions of the level of “patient centeredness” was the better predictor of health outcomes and efficiency (fewer diagnostic test and fewer referrals). Patients and families recognise when their needs are paramount and fare better as a result.
Dr. Rod Hunt, a neonatal physician at the Royal Children’s Hospital,Melbournebelieves it’s a good thing that family-centred care is changing the way medicine is practised. “Society now expects parents to be involved in decisions about their child’s care and expects there to be partnership in healthcare, rather than a heavy-handed approach from doctors.”
Working with neonates, Hunt and his team are particularly aware of how important it is that families caring for babies with complex health needs are well-informed and supported both in the hospital and at home. “When families are included in the decision-making, consulted about the care plan and educated about their child’s health needs, they are better able to cope once they are home on their own.”
However, family-centred care may also present complications. There may be serious health decisions which families cannot bear to make — and should not be asked to. And while this new way of working will require a culture change for some doctors, they are not the only ones having to re-think the doctor-patient relationship. Patients and families also need to adapt, and that may be a tall order for some.
In our parents’ generation the roles were more clearly defined. Doctors gave orders, patients followed them. That clarity was comforting to many families and often carried with it an assurance that the doctor’s diagnosis and directions were correct. With significant improvements in diagnostic equipment and advances in treatment options in many fields, today’s doctors have an even greater chance of “being right”. Yet, despite this, the changing nature of the doctor-patient relationship — to more of a partnership — may erode patient confidence in the short-term.
Our family experienced this same doubt years ago. We were living in a country with a very traditional, non-family centred approach to medical care. Although at times very frustrated by this, with two children requiring on-going hospital care, we eventually became accustomed to the hospital’s philosophy. However, while on holiday out of the country, visiting my parents in California, our son Oliver became unwell and had to be hospitalised. We were surprised to find how embedded family-centred care was in that hospital’s culture. And, while it was a welcome change, there were adjustments. The nursing staff were grateful we were staying with him and considered us part of his healthcare team. We were consulted regularly. The doctors, who did rounds in pairs rather than by the dozen, asked me how I thought things were going. I remember being dumbfounded by this question, staring at them vacantly, as though they were speaking Mandarin. After living for years in a medical dictatorship, I had lost confidence in my own judgment, and their question made me doubt theirs.
Finding the way ahead with family-centred care — or whatever name it goes by —may require adjustments on all sides. But if it leads to better outcomes and happier families, then it’s worth the hassle. As Hunt notes, “Our first priority as doctors should be doing what’s best for the patient.” Thankfully, patients and families couldn’t agree more.