BMJ  2005;331:E364-E365 (9 July), doi:10.1136/bmj.331.7508.E364

BMJ USA: Editorial

Describing the road to death

We give hope to our patients when we describe the terrain of their demise

A hundred years ago, more than 80% of Americans died of acute illnesses, mainly pneumonia, tuberculosis, and complications of infectious diarrhea and childbirth. Rapid death was common, and much of it occurred in the young.

By 2000, more than 80% of Americans died of illnesses that were chronic and progressive, mainly heart failure, cancers, progressive lung diseases, and complications of stroke and dementia. Today, rapid death among the young is rare, while predictable death among the aged is the norm.

As the pathway toward death has changed, the role of prognostication seems to have declined. From ancient times until very recently, it was the doctor who foretold the patient's future who was most valued by the community. For a myriad of reasons that are well described, physicians seem to have grown averse to predicting the future for patients and their families, even when asked directly.^1,2

And when physicians do attempt to prognosticate about life expectancy, they are almost always wrong. No study has ever shown doctors to underestimate life expectancy,³ and one well-done study of oncologists prognosticating about patients already on hospice showed the doctors' estimates to be overly optimistic by a factor of five.⁴ If we tell a patient he will die in a month, he is likelier to be dead in a week. At the same time, patients consistently say they want their doctors to be honest with them about what is to happen, albeit with sensitivity and a sense of timing.^5,6

But we can escape the dilemma with help from the trajectories of illness outlined in this issue by Murray and colleagues (p 287). As they point out, a patient's question of "How long?" often is code for the more existential question: "What is going to happen to me?" We may be unable to predict "how long" with precision, but we can often describe "how."

Those with chronic, progressive illness usually arrive at death by one of three roads, exemplified by the cancer patient's long high-function plateau followed by decline; the decline punctuated by acute exacerbations seen commonly among patients with heart failure and obstructive lung disease; and the slow, progressive demise that comes typically from degenerative neurological diseases such as Alzheimer-type dementia. Of course, patients sometimes take more than one road: the dementia patient may suffer frequent episodes of sepsis, or the heart failure patient may develop acute renal failure and decline precipitously to death.

The trajectories described by Murray et al are road maps, and like most road maps, they simplify the terrain, sometimes too much so. Yet they can be critical guides to our patients on their final journeys. For a traveler on a strange road, a road map relieves the anxiety of the unknown.

When we know what is ahead of us, we are freer to live more fully today. A patient with heart failure can plan more realistically if he knows his chronic illness will likely be punctuated by acute exacerbations. He can choose ahead of time what he might do when a crisis arrives—call his doctor or call 911, agree to hospitalization or care only at home. A road map also helps physicians more realistically define the limits of therapeutic options, and it can enable physicians to decide when patients might be eligible for hospice.¹

A prognostic road map can promote hope. Hopelessness is related to uncertainty. Knowledge of a journey that lies ahead removes some uncertainty, making room for the hopes that evolves toward death—hope first for life, then for a life of reasonable quality, then for a life without pain, then for a life of spiritual growth, and finally for life enough to say "goodbye."

The trajectories of illness provided by Murray and colleagues allow us to engage in transformative conversations with patients who have chronic, progressive illnesses such as cancer, heart failure, chronic obstructive lung disease, and progressive neurologic diseases. Patients and families are often eager for sensitive candor near times of diagnosis and crises such as hospitalization.

First, and perhaps most importantly, we can close the door, sit down, shut up, and listen—listen with our hearts.

Second, we can ask the unaskable with questions such as, "What do you think is going on...?" or "What scares you the most?" or "Tell me what you hope for."

Third, we can be honest, which can be done in three sentences:

• "Eventually you are probably going to die from this illness."
  
• "I may not know for sure how long you will live, but I will try to keep you comfortable as things go along."
  
• "Meantime, I can tell you what is likely to happen along the way" and then draw out one of the trajectories described by Murray et al.
  

Finally, we can commit: "We cannot change what will eventually happen, but you do not have to suffer along the way, and I (we) will be with you."

The patient is transformed into an enlightened traveler with a realistic hope of arriving "safely." The doctor becomes a healer.

Providence Everett Medical Center
Everett, Washington
joanne0402{at}yahoo.com

---

Clinical review p 287

Competing interests: None declared.

References

1. Glare P, Christakis N. Predicting survival in patients with advanced disease. In: Doyle D, Hanks G, Cherny N, Calman K. Oxford Textbook of Palliative Medicine (3rd ed.). Oxford: Oxford University Press, 2005.
2. Lamont EB, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med 2001;134: 1096-1105.[Abstract/Free Full Text]
3. Glare P, Virik K, Jones M, Hudson M, Eychmuller S, Simes J, Christakis N. A systematic review of physicians' survival predictions in terminally ill cancer patients. BMJ 2003;327: 195-200.[Abstract/Free Full Text]
4. Christakis NA, Lamont EB. Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study. BMJ 2000;320: 469-73.[Abstract/Free Full Text]
5. Hagerty RG, Butow PN, Ellis PM, Lobb EA, Pendlebury SC, Leighl N, et al. Communicating with realism and hope: incurable cancer patients' views on the disclosure of prognosis. J Clin Oncol 2005;23: 1278-88.[Abstract/Free Full Text]
6. Kirk P, Kirk I, Kristjanson LJ. What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study BMJ 2004;328: 1343.[Abstract/Free Full Text]

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