The Palliative Spectrum
Palliative care should not begin the moment a patient is determined to be terminally ill. There is a whole spectrum of palliation that starts at the moment of diagnosis.
From the day one is told one has a potentially terminal disease, such as soft tissue sarcoma, the prognosis of a premature death is an all too apparent option both to the medical practitioner and to the patient. Palliation, in the sense of needing to absorb and respond to the meaning of that option for the patient, becomes even then a medical imperative. GPs and oncologists need whatever empathetic skills they may possess to understand and to support the person who is suddenly and unexpectedly facing the prospect of their demise. The "How long have I got Doc?" question may not be articulated, but it will be there and it needs a response.
Curative treatments are sought and sometimes found, but - in the case of sarcoma - metastatic spread to the lungs signals the end of that phase and the beginning of a palliative treatment phase. Wherever the disease manifests itself the oncologists will seek to excise, nuke or poison the damaged tissue, but both the physicians and the patients will be aware that the many-headed Hydra can be disabled but never slain. There is palliation in the physicians and the patients working together to make a - putting it crudely - "cost/benefit" analysis of what may be gained at what cost. (Such a determination may also apply within the curative treatment phase: should one take neo-adjuvant chemotherapy now "just in case", or should one keep in on the shelf as a backup later if needed?)
The duration of that palliative treatment phase can be long (in sarcoma up to twenty years or more) or it can be brief. The ending of that phase is not solely a medical determination to make. Physicians may decide they can do no more, but the patient may disagree. Particularly with the rare sarcomas the active patient will seek out information through on-line support groups about developing treatment options across the world, some that may offer new hope and some merely a false dawn.
Contrariwise, it may be the patient who signals the end of palliative treatment. They have grown weary of endless bouts of chemotherapy, with all the attendant pain and perhaps diminishing returns, and may opt for a shorter but higher quality of life. Again, the skills of the medical profession in working alongside the patient in making that choice is an aspect of palliation.
When the disease has such momentum that death is predictable or imminent, then palliative care in the sense of minimising suffering and maximising the opportunity for a 'good death' (howsoever defined that difficult phrase) enters its final phase. If throughout this journey both the medical professionals and the patients have been aligned in their knowledge and understanding of the disease, have co-operated in taking decisions jointly, have taken the time to explore the holistic meaning of life, disease and death, then palliation as a spectrum can offer healing if not cure. If, however, being palliative only begins when the patient is in clear 'periculo mortis' then it would perhaps be of little surprise that the medical profession cannot then meet the patient, where they are needed, in the ground of their being and their not-being.
Competing interests: None declared
Competing interests: No competing interests