Mrs Kuan

Mrs Kuan has a lot to live for: her family, her career, her own pursuits and pleasures in life. She has also gotten a great deal of very bad news: first, the diagnosis of a life-threatening disease at an advanced stage, then, the failure of a potentially ‘high reward’ targeted therapy whose high price has devastated her family financially. Her options for controlling the progression of this cancer may no longer be good options. What, then, are her options for how she will live the rest of her life, however long that may be? And what ethical obligations do the oncologists and other professionals involved in her care have to Mrs Kuan at this stage in her life?

First, do no harm. There are several ways in which Mrs Kuan can be harmed. Metaphors of and allusions to battle (‘silver bullet’, ‘going all out’), common in cancer treatment, can make it difficult for a patient and family to understand, in concrete terms, what a treatment can and cannot do. After targeted therapy fails and Mrs Kuan is offered a choice between second-line therapy or a vague suggestion that she go abroad for treatment, Dr Khalid asks, ‘do you want us to go all out?’ It is hardly surprising that Mrs Kuan answers ‘Yes!’ to this leading question. However, this is a failure of informed choice, as Dr Khalid has not explained either of these options in terms of what they could do, and what they cannot do, for a patient in Mrs Kuan’s situation. Dr Khalid and his colleagues should be prepared to discuss the goals of cancer treatment after a potentially beneficial treatment fails, and to explain what the benefits and burdens of each treatment option would be.

Another potential harm includes the economic burden of pursuing treatment options likely to be expensive to a patient and family, without clarity about the value of this treatment. (A treatment that is relatively inexpensive can also cause harm, if it is unwanted or is more burdensome than beneficial.) When a physician offers a treatment to a patient, this implies that the treatment has potential value for this patient. Some patient and families may perceive high price as high value; patients, families, and professionals alike may slip into assuming ‘newer’ is always ‘better’, as in this case. These tendencies are especially pronounced in oncology because of the large number of treatments available, the extremely high price of many drugs, and media reports of ‘breakthroughs’ even when it is unclear whether a drug will help a patient live longer or will have other physiological benefit. In Mrs Kuan’s case, the patient concludes that attaining her goal – seeing her daughter graduate from university – will require going ‘abroad’ for treatment that her hard-pressed family will need to pay for in cash. It may be possible to reach this goal by other means, but Dr Khalid has not yet explained how that would be possible.

Second, show respect and support hope by telling the truth. Dr Khalid’s remark to his junior colleague is consistent with the common but problematic belief that a  healthcare professional’s role is to give hope and that to suggest stopping treatment destroys hope; research suggests that this belief is especially common among clinical oncologists. Dr Pak is, rightly, troubled, both by Dr Khalid’s assumption that it is acceptable to plant false hope after treatment fails, and also by the failure to take notice of what the patient told him about her current goal for her own life. When Mrs Kuan was first diagnosed with advanced cancer, she expressed her goals in terms of years; after treatment has failed, she has adjusted her hopes on her own. Taking Mrs Kuan seriously, as a patient and a person, means explaining clearly where things now stand, listening to what she says about her own life, and working with her to identify goals that are meaningful and attainable to her.

Third, provide care to the person and family living with cancer. Helping Mrs Kuan and her family manage a progressive illness should be a priority in her ongoing oncologic care.  The clinical oncologist, whether in the clinic or the hospital, should collaborate, as standard practice, with colleagues with expertise in the treatment of cancer pain and symptoms and other aspects of palliative care. Doing so offers better outcomes for patients both when they are continuing treatment and when they have decided to forgo treatment. Integrating palliative modalities into good care for all people with cancer is another way to demonstrate respect for the reality of living with life-threatening disease, and to ‘do for’ the patient, rather than ‘do to’ the patient.

Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.
—Vaclav Havel

He who has a why to live can bear almost any how.
—Friedrich Nietzsche

Mrs Kuan’s story is a common one played out in oncology settings everywhere. A patient with advanced cancer which has progressed through first (or second, or even third or fourth) line treatment, but desperate to live on, is offered another treatment by her oncologist. Not surprisingly, she grabs the chance, even though it will put a huge drain on her family’s already exhausted resources. Why? Because she hopes that by doing so, she can live to achieve her goal of seeing her daughter graduate.

Funny thing, this phenomenon called hope. It has been defined in myriad ways; humanity has written about it, sung about it, cried over it, prayed for it… yet it is so individual; those of us ‘outside’ cannot fully understand what the experience is like.

Dr Khalid’s remark ‘It’s our job to give them hope. What else can we give them?’ reflects the limited understanding of hope and its potential. This is a common symptom of the disease-directed approach of our healthcare system. If you only ever treat a disease, once there is no more effective disease-modifying treatment, then there are truly no more options. No more hope.

Yet even as we caution about encouraging false hope, we need to accept that hope is a powerful motivating force. Pulitzer Prize-winning journalist Amanda Bennett, in a TED presentation, shared the seven-year journey she and her husband had with his cancer. Although it was deemed a terminal disease, they simply refused to believe it. ‘We believed that if we were smart enough, and strong enough, and brave enough, and we worked hard enough, we could keep him from dying. Ever. And for years it seemed like we were succeeding.’

She talked about the irony of having an advance directive that was never put into effect, because, in their eyes, there was never a situation where there was no hope. They just kept on redefining hope. She sincerely believed she could keep her husband from dying, right up to a few days before his death. She admitted it was irrational, but ‘we fought, we struggled, we triumphed. It was an exhilarating fight… It turned what could have been seven of the grimmest years of our lives into seven of the most glorious.’

But, in the end, there was no graceful withdrawal from the battlefield, no goodbyes, just an abrupt 180-degree turn in what had been an all-or-none approach. There had been the one illness narrative, one story, one ending, but when that ending proved unrealistic, there wasn’t time for an alternative, gentler conclusion.

If I had advice for Dr Khalid, or indeed any doctor in a similar situation, it would be to acknowledge Mrs Kuan’s feelings and her hopes, as well as the uncertainty of her situation, and encourage what I call ‘parallel planning’, or ‘hoping for the best while preparing for the worst’. This is a way of gently getting patients and families to realise that they may not attain that far-off hoped-for goal. But that does not mean that all is lost. There are other achievable goals; there is still a lot of living to get done, and an alternative ending to the story to write.

For hope is a dynamic phenomenon and has many sources, some more obvious than others. We just need to be open to those possibilities. But for hope to endure through the dark times, there needs to be a sense of meaning, something to sustain the spirit. This is tough for doctors because we cannot simply scribble ‘hope and meaning’ on a prescription pad. Rather, it is a journey for the patient and family. Our role is to pace with them, to be fully present for them, and to practise less of the ‘doing to’ and more of the ‘doing for’.

Mrs Kuan has incurable melanoma. This is devastating news for someone still considered young and a working mother, with so much in life to look forward to. The treatment of advanced melanoma, should targeted therapy fail, is palliative. There is no cure here, and this difficult reality will need to be conveyed to the patient and family with as much sensitivity and objectivity as possible. While the concept of median survival is often interpreted wrongly, some patients do wish to know how much time they have left on hearing the news of terminal cancer. This helps them make concrete plans and cherish the time that they have left. If a cancer patient has a median survival of one year, the patient and family have to understand this does not mean that he or she only has one year left. It essentially means that half the patients with the same condition will still be alive at one year. Here is where a conversation about duration of life, quality of life, and available treatments should come in. If Mrs Kuan had said to me that she needed to live another five years, my obligation as her medical oncologist, mindful of her uncertain prognosis, would be to communicate a more realistic goal of training the cancer over a six-month period, and revisiting her goals at that later point.

The last few years have seen exciting breakthroughs in the treatment of advanced melanoma. Immunological therapies and  BRAF mutation inhibitors have both been shown to improve survival in this difficult disease in large phase III trials as first-line therapy, and they have been FDA approved.  What is important to convey is that while these newer drugs represent major advances in the management of advanced melanoma, they do not amount to a cure by any means. The discussions must centre around prolongation of life, disease control and quality of life improvement, all of which can be potentially achieved by these drugs. It is also important to share that some of these patients may not derive any benefit from these drugs in spite of their promise. Finally, these newer drugs are very costly, ranging from SGD5,000 to SGD10,000 per month.

In the case of Mrs Kuan, she was one of the unfortunate patients who did not respond to the first-line targeted treatment after four treatment cycles. The medical oncologist will then have to decide whether further treatment would potentially help Mrs Kuan, including helping her to meet her specific goal of seeing her daughter graduate in a few months. While there is not yet a gold standard for evidence-based treatment in this second-line setting, there are numerous studies that have shown tumour shrinkage and suggestions of prolongation of disease control in this setting. Both the potential risk and cost-benefit aspects of further treatment should be discussed with the patient and the family. The medical oncologist has to be mindful that all her savings have been exhausted. Many oncologists can quote past real examples of patients who have done well with second line therapies, but we also need to be very careful not to exaggerate any claims and promises of hope.

There are some therapies for advanced melanoma that are not available in Singapore and are accessible elsewhere, so medical oncologists may need to think about whether to recommend an overseas consultation. However, in Mrs Kuan’s case, it should be taken into account that other therapies in Singapore may be sufficient to potentially control the disease for that few months’ extension and potentially even longer before she would eventually succumb.  It is important that the medical oncologist not suggest or imply that going ‘overseas’ will be of certain benefit to a patient.  Any such suggestion should be concrete, in terms of its potential benefits, with reference to evidence, and its known or likely burdens, including cost, and also time spent away from family, friends, and home.

Offering to the patient a clinical trial is another option that I feel is acceptable, but the medical oncologist must be prepared to discuss fully with Mrs Kuan available information on the trial, the potential benefits and risks, and why enrolment is a realistic option for her. The patient will not face big financial burdens in Singapore, as the major components of any clinical trial, including the drug/s, will not be transferred to the patient and would instead be sponsored. However, a clinician with primary responsibility for the care of the patient should carefully explain the difference between standard therapy and participation in a research protocol, and also declare potential conflicts of interest.

Importantly, a discussion of how to involve the palliative care team, especially in the end journey, should begin and also be addressed with sensitivity. This will ensure that the patient and family realise that good symptom control and better gains in quality of life are not all about anti-cancer therapeutic interventions. Medical oncologists must resist pursuing endless interventions simply to put off or avoid altogether an ethical imperative to discuss end-of-life questions with cancer patients.