Cancer isn't the only malignant disease

Tom was an inpatient for most of my six months on the vascular firm. Sometimes he'd be under the cardiologists, occasionally at home. His peripheral vascular disease meant horribly ulcerated legs and renal failure; his many heart attacks had left him with virtually no left ventricular function. Phlebotomy was impossible because of his gross oedema and he had reached the stage where he couldn't breathe sitting upright, let alone lying down with pillows. The nurses constantly battled to get him into bed and elevate his legs.

Tom was in more distress than any cancer patient I have seen

Tom was in more distress—so causing me more stress—than any cancer patient I have ever seen. I argued with senior staff about the need to keep checking his climbing Us and Es and received little clear direction or management. As he refused amputation and had visible swelling, it seemed obvious to me that a terminal cardiac event or sepsis would take over sooner or later. Did he really need to wait in hospital?

We eventually got him home, where he died two weeks after discharge, away from trial diuretics and needles. Tom is one of many patients with malignant vascular disease that I saw in my preregistration year, malignant meaning virulent, not the lay euphemism for harmful tumours. The aggressive end stage management of these patients sharply contrasted with the palliation of terminal cancer patients.

The BMJ series on the ABC of palliative care cites the World Health Organization definition of palliative care as “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families” (BMJ 1997;315:801-4).

OK, so it doesn't say that palliative care is the prevention of phlebotomy or the insistence that the patient sits where he or she is comfortable. It doesn't say that the patient should be out of the hospital environment. But Tom's disease was non-responsive, his leg ulcers were agonising, his oedema uncontrollable. We were psychologically bringing him down, I'm sure, and the two daily bus trips that his wife made to hospital could not have been ideal for her.

One chapter of the ABC discusses non-malignant conditions, including advanced cardiac disease (BMJ 1998;316:286-9). It emphasises the lack of cure, high morbidity and mortality, and therefore the palliative needs. With grade four heart failure, as defined by the New York Heart Association, there is a 50% annual mortality, which is higher than with many forms of cancer.

So why do we not treat Tom and other patients who are not dying of cancer as terminal? The word failure should surely convey the condition's seriousness. Phrases such as “there's nothing we can do for him” are often said out of earshot of the patient and family, yet we keep such patients in to discuss their helplessness and our hopelessness.

There is a lack of information on how to manage these people. The recent ABC series on heart failure discusses the use of ventricular assist devices, heart transplantation, and other heroics (BMJ 2000;320:559-62). Palliation is seemingly not an issue.

It seems that the word palliation cannot exist in a sentence about non-neoplastic conditions. A literature search of Medline articles from 1997 to 2000 combining arterial insufficiency, peripheral vascular disease, and palliative care as textwords and subjects produced three irrelevant articles. Combining heart failure and palliative care gave seven articles, one of which was relevant.

This article addresses hospice eligibility in advanced lung, heart, or liver disease. Most hospices require a survival prognosis of less than six months before accepting patients. The authors found recommended clinical prediction criteria ineffective at identifying this population, 75% surviving longer (Journal of the American Medical Association 1999;282:1638-45).

One further recent article is strongly in favour of my argument. Through talking with patients, researchers found that people with heart failure did not understand the cause or prognosis of their disease. Patients felt that doctors did not want to give them information (BMJ 2000;321:605-7).

Unclear prognostic indicators mean that clinicians do not address death and dying issues with themselves, staff, families, or patients. Unlike clinicians, though, patients and families do not realise the kind of death that conditions that are not cancer can lead to, so I believe that informing them of the likely outcome is extra important.

We are reluctant to palliate formally without knowing when patients are likely to die; we like to think of the end stage as brief and predictable. More research is needed into the needs and outcome of this group, and attitudes need to change in the profession.