Managing chronic diseases

Editor—Palliative care does not start when a patient is dying.¹ A whole spectrum of palliation begins from the day of diagnosis of a potentially terminal disease, such as soft tissue sarcoma.

Palliation, in the sense of needing to absorb what this means for the patient, becomes even then a medical imperative. The “How long have I got, Doc?” question may not be articulated, but it will be there and needs an empathetic response.

Curative treatment is sought, but—with sarcoma—lung metastases signal the end of that phase and the beginning of palliative treatment. The doctor and the patient know the dragon can be disabled but never slain. Palliation is then partnership, working to decide what may be gained at what cost. (This may apply during curative treatment: to take chemotherapy drugs now “just in case,” or to keep them for later?)

Figure 1.

Palliative treatment can be long (in sarcoma up to 20 years or more), or it can be brief. Its ending is not solely a medical judgment. Doctors may decide they can do no more, but active patients use online support groups, seeking new treatment options across the world.

Patients may decide to end palliative treatment. Grown weary of painful chemotherapy offering diminishing returns, they may prefer a shorter but better life. Making that choice together is an aspect of palliation.

When death is near, palliative care becomes terminal care. If throughout doctors and patients have aligned their understanding of the disease, and have taken decisions jointly, have explored the holistic meaning of disease in life and death, the palliative spectrum may offer healing if not cure.

If, however, being palliative begins only when the patient is dying doctors cannot then meet patients, where they are most needed, in the ground of their being and their not being.