THIS week, 16–22 April 2018, is National Advance Care Planning Week, which provides the opportunity for us to consider why advance care planning (ACP) is elbowing its way into the heart of health care as a core responsibility for doctors, whatever our field of practice.
A recent article in The New York Times discussed how some doctors find it difficult to broach with their elderly patients the benefits of stopping routine screening for cancer because it takes time to discuss the balance of risk and benefit. Doctors can be unwilling to talk about the inevitability of death because they fear that their patients might become distressed. Even though we know from evidence that the likelihood of benefit is eventually outweighed by the risk of harm (not to mention the cost), this reluctance by doctors denies patients the opportunity to make wise decisions that reflect what is important to them.
While none of us want to upset our patients, the inescapable reality is that we must nurture our social skills to fulfil one of the most important tasks for doctors: the communication of information that causes distress.
Effective communication leading to wise decision making is founded on diverse principles.
First, it is important to remember that medical information belongs to the patient and that the information, not the doctor, should be the source of distress. Our presence should help our patient to feel secure in the knowledge that they will be cared for whatever happens.
Second, in order to impart this information and engage in these somewhat difficult conversations, a healthy dose of candour and openness is necessary on the part of the doctor. Our clinical relationships should be based on the common understanding that life is finite and dealing with death is a necessity. As doctors, we are simply supporting our patients to have the best life possible and, when appropriate, to integrate dying into planning. As human beings, we may be deeply saddened by the prospect of death, separation and loss, or shocked by the timing of it, but we should not be surprised by the fact of it. This approach integrates planning as the pursuit of a balance between quantity and quality so that patients can choose the life they prefer, based on the options available to them.
Third, the factors that shape our choices are often very complex. We each live with the unique combination of our individual values, goals and preferences. We grapple with the complexity and variability of our anatomy, physiology and pathologies, and the innate uncertainty of outcomes from the complex variety of treatment options on offer to us. The consequence is that, in the face of serious or life-ending illnesses, difficult decisions about which direction to take can only be reached after informed contemplation, with acknowledgement of the context of a finite life.
Finally, while as patients and families we would like absolute certainty, as doctors we must promote an understanding of the concepts of probability, chance, risk and benefit in health care and their role in decision making.
Modern technology offers patients and their families almost unlimited access to information about their illnesses, the available treatment options and likely outcomes, as well as the potential hazards and benefits that might await them. However, patients almost invariably find that the complexity of health care is well beyond their experience and understanding. This is not patronising. We all rely on honest expertise to guide us to informed decisions that are in our broad interests, a reality that has me deferring to an engineer, an electrician or an accountant.
As doctors, we are our community’s health care experts and, increasingly, our patients expect us to support them as they prepare for and make the treatment choices (including ACP) that will shape how they experience their lives.
Individual patients and the community at large are becoming more aware of both the right and the necessity to participate in health care decision making. Part of this stems from individuals’ asserting their right to manage their own destiny, irrespective of the preferences of others, possibly because too often they have seen the harm that comes from decisions that are imposed. It seems inevitable that empowered patients (or their substitute decision makers) will start to make health care decisions that are driven by the overall consequences for themselves rather than for the parochial impact on their disease.
National Advance Care Planning Week is being promoted widely across the community. Over time, we will see a growing tide of our patients and their families expecting us to:
- explain why ACP is important, how it relates to their circumstances at this time in their life, and how to do it properly;
- discuss their values, hopes and wishes – the things that are important to them;
- explore their options and the likely consequences of the treatments that we are offering;
- use our knowledge and experience to provide guidance for the complex decisions that they may have to make;
- ensure that their decisions are turned into appropriate action plans that will be respected; and
- support them in the future as they deal with the twists and turns that characterise our journey to the end of our life.
These activities are very simply the core of ACP and good medical practice. Both can be understood as a negotiation – a compact, between a patient and their doctor to make the best choices from whatever is available.
The latter part of the 20th century and the beginning of the 21st century have seen dramatic changes in the nature of health care. In the past, we could offer little more than comfort, and, assuming that we do not just act as technicians treating disease while ignoring the goals and needs of the whole patient, contemporary health care requires that we work with our patients to find the best path through the maze of choices. We have the power to sustain lives of good quality for prolonged periods by controlling diseases and providing substitutes when anatomy and physiology fails. Sometimes we prolong lives without patient-defined quality. Whatever we do, eventually, we are no match for the ravages of time.
While we are asking our community to adapt to contemporary circumstances, we should remember that as doctors we too must change. We should never be an obstacle on the road to the wise decisions that determine how our patient will experience their life.
Dr Will Cairns, OAM, is an Ambassador for National Advance Care Planning Week 2018, and is the Queensland Statewide Clinical Lead for Care at the End of Life.
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