When doctors and patients make joint decisions
With all the complex treatments, time pressures and cost-cutting measures that medics face in their day-to-day practice, one question is often overlooked: What does the person who’s being treated actually want? Shared decision-making aims to address this. But can it work in practice?
Shared decision-making means that everyone affected has a share in deciding whether the best medical decision is also the best for the everyday life of the patient. | Photo: Maskot / Getty Images
“From a purely medical point of view, performing a tracheostomy on a child isn’t a big deal”, says the paediatrician Jürg Streuli. “But is it the right thing for the child and their family?”. A tracheostomy entails making an artificial opening in the windpipe when it becomes impossible for someone to continue breathing through their nose and mouth. It can in some cases prolong the life of a seriously ill child. But the tube inserted in the throat requires a great deal of care and attention. “It’s like having a little intensive care unit at home”, says Streuli. “The decision whether or not to do it has to be taken by the parents in the best interests of the child, and they have to be given adequate time and information for this”.
Streuli is the joint head of the paediatric palliative care team at the Eastern Switzerland Children’s Hospital in St. Gallen. His department cares for children with serious and terminal illnesses. “We employ our medical expertise to help a family in its decision-making processes”, he says, “and we adjust the treatment options in line with their own values, needs and fears”. His aim is to find a joint path forward. In the healthcare sector in the 1980s, this came to be known as ‘shared decision-making’. Since roughly the early 2000s, this approach has been recognised in hospitals and doctors’ practices as the gold standard for ethical decision-making. In 2014, the Swiss Medical Association (FMH) published a position paper on shared decision-making. Today, it’s even taught to medical students during their training.
Streuli is an expert in it. Alongside his job at the Children’s Hospital, he also works with the ‘Gesundheitskompass’ Foundation (meaning literally: ‘health compass’), a charitable organisation that helps people who are confronted with complex health situations and difficult medical decisions. He has identified six steps that should be initiated by the medical staff: (1) First, those affected should be invited to participate in the decision-making process – though neither the patient nor relatives may be compelled to do so. (2) Then comes empathetic listening so that the doctors can understand what those affected actually want, and what their values and expectations are. (3) Those involved should then be afforded empowerment, for example, by being provided with the necessary medical knowledge; modes of thinking should be explained to them, and possible new paths forward communicated. (4) Things should then be put into context by asking the questions: Where do we stand, what’s realistic, and what isn’t? What treatment options are available? (5) Now the decisions have to be taken; implementing them has to be well planned along with any necessary supporting measures. (6) The final step is then evaluation.
This all might sound sensible, but such things often have little place in everyday clinical practice, says Denisa Kykalová, the project manager for patient involvement at the Swiss Patients’ Organisation (SPO). It’s a matter of great regret to her. “Shared decision-making takes more time”, she says, “but it pays off in the long run”.
In recent years, international studies have been conducted to evaluate the impact of shared decision-making. They’ve shown that patients do benefit from an in-depth exchange of medical knowledge. What’s more, they are more satisfied and have greater confidence in both their treatment and their doctors. But it remains unclear whether this encourages patients to keep to their treatment schedules in the longer-term, whether it ultimately leads to better clinical outcomes, or even prevents unnecessary therapies. The studies undertaken have applied all manner of criteria to measure the success of shared decision-making, but the result of this is that their findings sometimes contradict each another. For example, there’s the question as to the point when a medical conversation may truly be categorised as shared decision-making.
Still waiting for a national strategy
Kykalová nevertheless believes that patient participation is essential, especially in cases of long-term treatments – such as when someone has a chronic condition. “How else can the doctor know what the patient wants to achieve?”, she asks. “One patient with knee osteoarthritis might want to climb Mount Everest, while another just wants to be able to walk pain-free again”. But shared decision-making is still not used widely enough, she says: “We need a change in mindset on both sides”. Doctors need to get their patients involved, and patients should feel able to insist on shared decision-making.
The position paper that was adopted by the FMH’s Central Executive Committee in 2014 emphasises that shared decision-making is an ideal model that should be tailored to the situation at hand. Michelle Gerber is a research associate at FMH who co-authored the paper. She’s convinced that progress has since been made: “Shared decision-making has become an established concept in the medical profession”, she says. This is probably also because it has now become part of quality control initiatives. But there’s no clarity on the extent to which it has actually been introduced into everyday clinical practice. She admits that there are pressures of time, and also adds that the tariff system for medical fees also imposes its own constraints. If shared decision-making is used during a doctor’s consultation, it can’t be billed as a separate item.
Kevin Selby, a doctor and researcher at Unisanté in Lausanne, also sees further challenges. He’s investigating the issue that many still regard as an obstacle: just when and how to implement shared decision-making. “Shared decision-making is superfluous”, he says, “if all that’s to be decided is whether to measure a patient’s blood pressure”. But he also insists that the method has to be used in cases of so-called ‘preference-sensitive decisions’. These are situations where there are several treatment options, and where the values and preferences of the patient play an important role. “And it’s an area where Switzerland still has to catch up”, he says.
“The Swiss healthcare system is highly decentralised”, says Selby. This makes it difficult to implement anything on a nationwide basis. Unlike in other countries, there’s no national Swiss initiative to promote shared decision-making. In the United Kingdom, by contrast, the National Health Service (NHS) has made it a core component of its personalised patient care and has developed programmes, training courses and implementation guides to ensure its use.
A whole team for a patient
“On the other hand, some really good local projects have come about in Switzerland in recent years”, says Selby. Gerber is also familiar with them, citing the Institute of Primary Health Care (BIHAM) in Bern as an example. “The Institute has issued documentation that doctors can use during patient consultations in order to facilitate shared decision-making”, she says. But she doesn’t believe in establishing rigid, overarching rules on how to implement it. “The medical profession has repeatedly said that there has to be some leeway in day-to-day medical practice if the individual circumstances of those affected are to be respected in the first place”, she says.
Shared decision-making can be challenging for patients. For example, if a cancer has metastasised again and difficult choices have to be made. Should they undergo another course of intensive chemotherapy if the outcome is uncertain? Or just accept palliative care? Thomas Banfi is a palliative care expert at the Biel Hospital Centre. He also sees himself as a facilitator whose task is to support the values and desires of those affected. “I’m privileged in palliative care”, he says, “because I have rather more time for patients. I can sit down at their bedside, answer their questions and explain treatment options again in simple terms. Above all, I can listen”.
For Banfi, shared decision-making is also a team task. “Sometimes a patient might feel unable to speak openly with their doctor, but will share their thoughts on the end of life with their physiotherapist”, he says. In order to achieve their aim of holistic care, his team holds weekly interdisciplinary meetings where they can discuss complex cases together. “This gives us the most complete picture possible of a patient”.
Streuli sums it all up as follows: “Shared decision-making is the art of putting people back at the heart of medicine”. Both he and Banfi are convinced that this goal can be realised, though they emphasise that it involves a constant balancing act. “It requires a great deal of sensitivity and a genuine interest in the other person”, says Streuli. “But fortunately, that’s still what sets us apart from machines, isn’t it?”.
