How I'd like to be treated if I was terminally ill

First of all, I'd like a quick diagnosis.

I'd like to know that my lump or bump would be removed quickly, in its entirety, before I've had time to fiddle with it so much that I blame myself for it metastasising or before a fine needle aspiration has aspirated all the normal cells, left the “baddies” laughing, and lulled me into a false sense of security.

I would wish to be told the outcome and prognosis by a doctor who will neither have me dead and buried before the diagnostic ink has dried on the paper, nor give me false reassurance and try to treat my untreatable illness until I haven't the strength to endure the attempt. Then I would like to hear that prognosis in terms of months rather than years, weeks rather than months, or even days rather than weeks, instead of as an absolute six weeks or six months (even as an approximation) so that I don't start ticking the days off on the calendar and then jump up and down for joy when I realise I've passed my “sell by date” and that therefore they must have been wrong and really I'm ok.

I would want to be able to choose a consultant who would sit on my bed, without his (or her) entourage, unafraid of what I might ask him and be prepared to explain to me, repeatedly, in words of one syllable, what I cannot grasp—and then do it all over again in one week or two weeks or one month later with a gentle consistency and sensitive honesty that leaves me in no doubt as to the truth of the facts of the matter. He would give me the options available to me in such a way that I don't feel that I would let him down or that he would abandon me if my choice is not according to his wishes. He would understand that my fear is not of death (of dying, perhaps) but of the unknown or the suspected. News, good or bad, I can cope with; it is uncertainty that is so difficult. I'd like to feel that he was there for me when I needed him and that, if I needed some procedure to relieve symptoms, he would do it with his own experienced hand rather than leaving me to be the guinea pig on which the new junior might learn, and that he would do it now, rather than at the end of next week's list, so that I might enjoy a few more precious days in comfort. And when my symptoms don't fit in with what the radiographs and tests say is ok, please may he listen when I say it's not ok, that there's something wrong.

I would want to benefit from the wisdom of an old fashioned general practitioner with up to date knowledge who will be both confidante and physician, keeping contact often, aware of changes in my condition, and with a mind one step ahead, prepared for the way things might develop. A doctor who believes that palliative medicine is important and firmly within the realm of general practice and who doesn't abandon me solely to the care of the Macmillan nurse and avoid me, but is prepared to include the nurse as part of my team. May this doctor question me closely about my symptoms, wanting to understand them, and make a diagnosis before treating their cause. May he have a good working knowledge of the armamentarium of treatments available, know how to juggle them, and not be afraid of frequent and radical adjustment to his previous suggestions. May he have a broad mind to think around the problem of drug administration and be unafraid of titrating the drug against the symptom to be controlled, perhaps in larger doses than he's used to, remembering that there is no ceiling to the dose of opiates he might use, and translate that into a tablet here, a subcutaneous infusion there, a transdermal patch if feasible, a suppository only if absolutely necessary. May he remember to prescribe the laxative with the first dose of opiate and save me the indignity and embarrassment of the high, hot, and helluva lot of enema required to shift faecal impaction otherwise caused.

May I have the benefit of a nurse who understands that nursing is infinitely more than writing care plans on pieces of paper, and who will come now when I need her (or him) and not “in a minute dear” and then forget. Someone who finds out what the problems really are and anticipates those which are to come, who educates me and my family and friends in how to cope and care. A nurse who knows how to relieve symptoms simply by her all embracing care, who knows that comfort comes from basic things—a good bath, clean hair, a mouth that is not sore and coated, elimination that is easy and causes no discomfort, pressure areas afforded frequent and meticulous attention. May she be so skilled that those who follow her know that she has been, simply by the look of the patient she has left. May she, and her managers, know that this basic comfort is sometimes as difficult to achieve as adequate pain control but equally as demanding of her skills.

When my appetite is poor, may I be tempted with a sliver of smoked salmon served daintily with a wedge of lemon, accompanied perhaps by a sip of chablis, rather than be presented with pastie and chips or a can or carton of equally offputting (but very good for me) nutritional supplements. May I have no unnecessary tubes and applications to stop me from enjoying the human warmth and comfort of a cuddle.

So—if my bowel obstruction cannot be relieved by surgery then spare me the discomfort of the drip and suck and give me the drugs I need to stop me vomiting, to relieve the pain, eat a little, and live.

May I have friends and family who are willing to be just friends and family as they always have been and not feel that suddenly they have to take over my life and tell me how I should live it. Equally with my professional colleagues, may they be able to be just the people they are, leaving their doing hats outside the door when they visit, not asking for unnecessary medical details, and according me the confidentiality which they themselves would wish. May they, along with my friends, enable me to be me, as far as possible in the roles I have, and to be independent with dignity to the end in my way, even if eventually only with my mind.

May this team of professionals, friends, and family be challenged by my care.

May they have my goals as their own.

If I want to see the snowcapped mountains of Austria once more may they know how to help me make that possible, be prepared to help me take the risks involved, and be able to find out about the travelling possibilities, the insurance rules, and the Home Office licence required to transport my opiates abroad.

I'd like to be cared for by people who understand that when the science of medicine has done all it can, the art of medicine still has its depths to plumb. People who understand the concept of healing that does not involve cure, that enables me to be bigger than the illness that afflicts me: not ignoring it, nor unaware of it, but able to rise above it and spend my time not dying but living every moment and living it to the full, as best I can, until the day when life as I know it ends here.

Lastly, I'd like my family and friends not to shy away from allowing me to get my shabbily kept affairs in order, so that I can make my wishes known and organise things, right down to my funeral service—so that even then, as my grandmother predicted long ago, I would still have the last word.