CHAPTER 26 Who’s missing: where’s the consumer?
‘Consumers’ are people who utilise goods or services. In the health care system consumers can include patients, families, carers and organisations (Consumers’ Health Forum [CHF] 2007). Whether you are admitted to hospital or go to an Emergency Room (ER), visit your general practitioner or community clinic, consult a chemist or a physiotherapist, take a headache pill or have a massage, you are a health care consumer.
In times past, health care information was restricted to a select group of health care practitioners, however the advent of the internet has improved access to high-quality, up-to-date health care information for many people. This increased access to health care information has changed the relationship between health care consumers and health care providers. Consumers overall are now better informed, with the ability to locate advice on a wide variety of health-related questions. Quality of the advice available is, however, variable and some groups have formed with the specific goal of providing accurate, relevant, up-to-date information to consumers (see, for example, Consumers’ Health Forum, and HealthInsite under online resources at the end of this chapter).
Society’s expectations of the health professional–health consumer relationship has also changed. In 1992 the landmark court case Rogers vs Whitaker redefined Australian common law, reaffirming the right of patients to make their own decisions about treatments and the medical practitioner’s responsibility to provide reasonable information on which to base those decisions. For a short summary of this case, see under McDonald in the further reading section at the end of this chapter.
Despite the broader social, cultural, economic and political perspectives of consumer involvement in the health care system, most health care professionals and consumers still interact on an individual basis, as patient and provider. It is in this one-on-one realm that we can make our personal contribution to patient involvement in health care. The following case study is the story of a patient: the health care journey for one child and his family.
Keown Jaymes Dunn died 2 days before his 10th birthday. He had been sick for 4 years, 7 months and 17 days. Actually, he had been sick for much longer than that, probably all his life, but it was on 15 August 1998 that the medulloblastoma growing in his brain gave notice to him and us, his family.
With seven of us getting off to school and work, mornings in our house were always chaos. Keown’s occasional headaches, maybe sometimes vomiting, were nothing more than the same school morning illnesses that plagued the rest of the children, certainly nothing to set my critical care nurse senses tingling. Until one morning when the school called — ‘Keown has a bad headache. He’s crying and the light hurts his eyes.’
The run to the ER — waiting, waiting — wide pulse pressure, slow pulse, slow respirations. I know it’s not meningitis — no fever, no rash, no stiff neck — but please, please rule out a space occupying lesion. Space occupying lesion — that’s what I said. This was my little boy. I was so scared I couldn’t even think it let alone say it — what if it’s a tumour? What if it’s a brain tumour?
The ambulance trip to the Children’s Hospital, the emergency neurosurgery. The system took over — a very short meeting with the neurosurgeon to explain what he was planning and the risks. While one nurse prepped Keown for surgery, another nurse scoured the hospital for a camera so we could take a picture — in case we never saw him again. Keown was too sick to even hear the neurosurgeon; his head hurt too much to listen or talk. James, my husband and Keown’s father, and I repeated what the neurosurgeon had said, signed the consent form, but with that presentation there weren’t options, there were no real choices, there wasn’t time.
Post-op — waiting — did they get it all? Will he wake up? And if he does, will he still be our son? His brain, they have operated on his brain, and he’s only five years old. As Keown lay in paediatric ICU, the neurosurgeon came to see us, telling us what had happened, reassuring us that the surgery had gone well. But I am a critical care nurse and this was my job, caring for patients following neurosurgery. I know what can happen. I know how ‘successful’ can hold quite different meanings for health professionals than it does for families.
Treatment for medulloblastoma involves three major interventions: neurosurgery to remove as much of the tumour as possible, radiotherapy with high-dose radiation to the tumour site and lower-dose radiation to surrounding brain tissue to kill localised cancer cells, and chemotherapy to eliminate any cancer cells that may have escaped to more distant sites. Each step of the treatment brings benefits, increases the chances of survival, but it also brings short-term side effects and risks, and long-term complications. Side effects and risks like memory damage, paralysis, radiation burns, brain infections, kidney failure, sterility. Long-term complications like retardation, hormone system damage, secondary cancers, deafness, cardiac failure.
The evidence, the research, told us that, overall, there was maybe a 70% chance of survival and certainty of side effects and complications. The evidence talked about children less than 5 years old having increased risk of cognitive damage, children over 10 years being at less risk. What about Keown! He is 5 years and 6 months — what about him?
And the long-term outcomes are based on treatments given 10 or more years ago. Treatment regimes and equipment have changed since then — what are the long-term outcomes for this child, in this chair, right now. I don’t care about the other 99 out of 100 children — what will happen to Keown?
In our society in the past it was assumed that health care professionals and patients shared the same goals and values, but it was only doctors who had sufficient information and experience to decide what should be done for sick people. Patients (clients and consumers of health care) were involved only as far as giving or withholding consent for treatment (Coulter & Cleary 2001; Coulter & Ellins 2006).
This paternalistic approach to patient–practitioner interactions is slowly changing due to forces both within and external to the health care system. Patients now expect to have their preferences and wishes taken into account. Some patients even expect to make the decisions about their own health care, treatment and therapy. In any case, all patients expect and require information to be provided in a manner they can understand. This is not simply a matter of being nice, but is a point of law. The 1992 High Court of Australia case mentioned above, Rogers v Whitaker, recorded a judgment that should have fundamentally changed the way a health professional regards his or her relationship with the patient. Not only is the patient entitled to make his or her own decisions, but the health care provider must now ‘take account of the circumstances of the patient … and ensure that they provide them with adequate information’ (Duckett 2000) to make those decisions dealing with their health care.
In the contemporary health care system in Australia, patients expect open, reliable, respectful communication from their health care providers, be it their doctor, nurse, physiotherapist or naturopath. Failed communication, not understanding what has happened, seeking explanations, a need to have their situation recognised, are the top reasons why patients lodge a formal complaint or sue their health care provider (Vincent, Young & Phillips 1994). As was noted in Chapter 25, medical defence organisations spend considerable time teaching doctors to communicate with their patients as a strategy for reducing litigation. This training is not simply about protecting health professionals but is a recognition that patients need to be central to the decision making about their health care to have the best outcomes.
In the past there was an emphasis on the benefits of the various treatment options available to patients, with the doctor usually describing the positive outcomes expected from a treatment. Today legal and social trends require health professionals to provide the patient with full disclosure of the risk as well as benefits of the treatment. The evidence suggests that patients may be more adverse to the risk of serious side-effects than clinicians think, or give them credit for (Vincent, Young & Phillips 1994; Coulter & Ellins 2006; Duckett 2000; National Health and Medical Research Council [NHMRC] 2004).
Now patients and their families need to know their diagnosis, the cure rate, and treatment options (Coulter & Ellins 2006; International Patient Decision Aids Standards [IPDAS] 2006; NHMRC 2004). These priorities are consistent across age, gender, and time from diagnosis, and are not peculiar to adults or well-educated patients. They include children, teenagers and those with developmental delays as much as they do adults.
Full disclosure requires that patients and families understand the basis for recommendations of treatment options. They need to be told ‘in a manner they can understand’ the strength of the evidence that supports recommendations, including the quality of any research and the degree of certainty regarding outcomes (Duckett 2000). Framing — how information is presented — can dramatically influence decisions. For example, even though the statistics mean the same thing, a patient is more likely to chose a treatment option that is presented with survival statistics (‘half of all patients survive for 5 years or more’) than with death outcomes (‘half of all patients die in less than 5 years’). Certainty, effectiveness or risk, can be difficult concepts for people to understand. One way to do this is to present the outcomes or risks in treated and untreated groups by indicating how many out of 100 patients who had the treatment have a particular outcome (NHMRC 2004; O’Connor 2003). Patients and families also need to understand the relevance of the evidence to their own situation. This includes such information as whether the participants in medical trials were similar to them and if treatments were provided in a similar way (Coulter & Ellins 2006; IPDAS 2006; NHMRC 2004). These dilemmas are outlined below in the second part of our story of Keown.
In our case we didn’t know if Keown was one of the lucky ones who was always going to survive, and all we have done is give him complications. We don’t know if we have moved him from death to a slower, more tortured death. We don’t know if we have moved Keown from death to life — and if life, we don’t know at what cost.
Our goals were not the same as those of the health care professionals. How could they balance the risks and benefits associated with treatment with our values and beliefs? Is a 10% increased chance of survival worth a 25% risk of deafness? Is it worth a 30% risk of kidney damage? What if there was a 50% increase in chance of survival but 75% risk of brain damage? The best the doctors and nurses could do was present the information, help us understand what it meant for us, for Keown and perhaps offer informed options.
The drain, the leeching of one’s soul, the constant pain and dread of making these decisions — with no firm basis, without clear direction, full of uncertainty and fear. The terror of getting it wrong. It is not a medical choice. It is not a legal choice. It is a choice born of agonising over the unbelievable, grappling with the unknowable and weeping over the unthinkable.
We are none of us guaranteed a safe life. Keown could be hit by a truck as he crosses the street. But no one would ask me to choose the make, model and speed of the truck that will hit him. And that’s what we’re doing here.
As my husband and I talked about the evidence, about what it told us and what it didn’t, about what we and our family valued, and we talked to Keown about his life, we agreed that survival at any price was not our goal. For all of us, merely being alive was not a good outcome. We chose treatment with low-dose radiotherapy to the brain and higher-dose long-term chemotherapy, a regime with a reasonable chance of survival, but less risks of damage to Keown’s brain.