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Published on 20 March 2008

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Reflections on cancer patients’ “quality of life”

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Cancer patients typically have more optimism and will to live than most people expect — but a recent study found that a large proportion of their precious time was being wasted

 

Yaakov Cass
MSc FRPharmS

Regional Pharmaceutical Officer

Israel Ministry of Health
Ramle
Israel

There has been much debate over oncology patients’ “quality of life”. Most papers on the subject evaluate the issue from a “scientific” viewpoint but give little clear definition of “quality” or “life”. Reading US comedian George Carlin’s views on ageing gave me a useful starting point to put the subject into perspective.

He writes: “Do you realise that the only time in our lives when we like to get old is when we’re kids? If you’re less than 10 years old, you’re so excited about aging that you think in fractions. ‘I’m four and a half! Going on five!’ In your teens you can’t hold back. When you are 13 you’re going to be 16! Finally, you become 21.

“But then you turn 30. Sounds like bad milk. He turned. We had to throw him out. Next you’re pushing 40 and before you know it, you reach 50 with your dreams gone. You make it to 60. You’ve built up so much speed that you hit 70. By the time you get into your 80s every day is a complete cycle; you hit lunch; you turn 4.30; you reach bedtime. Into the 90s, you start going backwards: ‘I was just 92.’ Then a strange thing happens. If you make it over 100 you become a little kid again. ‘I’m 100 and a half!’ May we all make it to a healthy 100 and a half.” Carlin argues that “quality of life” is not the number of breaths we take but the moments that take our breath away.

I have always believed one’s calendrical date of birth is of minor importance. Our sages teach that some things need to be taken care of at certain ages and maturity brings wisdom, but we must avoid being trapped in paradigms that some things must be finished by a fixed age while other things are not to be attempted until a predetermined number of years of life have passed. One is never too old or too ill to give and receive great pleasure in life.

But what about cancer patients? How happy and fulfilled can their lives be? Surprisingly, the incidence of suicide among cancer patients is much lower than that of “healthy” people, even when the outlook is bleak. Such patients typically have a genuine optimism and a greater will to live than most people seem to expect. In my career I have met many such patients. Some survived, others did not. But almost all of them saw each day as precious. I recollect the maths professor who prepared her lectures while receiving chemo­therapy and who tried to explain to me some of the finer points of advanced calculus. There was the national bank director who came in for chemotherapy at 6am so as to get to the bank on time, thus keeping his illness secret. One patient always came by early in the morning to bring me a coffee, leave me his newspaper and ask how I felt today. We had staff members who received chemotherapy in the morning and worked in the dispensary in the afternoon. The only difference I ever sensed in my patients was an awareness that they had a lot to achieve and the “possibility” of less time to do it in. There was never a sense of self-pity or despair.

How sad then to learn that much precious time is needlessly lost to such patients simply by waiting. A recent study(1) sheds light on the hours lost travelling to, waiting for and receiving care. Over and above time spent receiving therapy, blood tests, scans, surgery and checkups, driving to appointments or just waiting one’s turn, there are lost days spent at home recovering from surgery or chemotherapy. Battling cancer uses a lot of time. The study estimates that at least 368 hours are wasted in the first year after diagnosis with ovarian cancer, 272 hours with lung cancer and 193 hours with kidney cancer. Much of this could be prevented with better management. Computer programs can help pharmacies prepare chemotherapy “up-front”. Even if the occasional patient is a “no-show”, the overall gain outweighs the occasional missed treatment and reduces the time patients have to wait to receive chemotherapy. Rather than bring patients into tertiary care centres with all that entails (including finding a parking space), we should move treatment centres and local daycare clinics into suburban ­areas close to patients’ homes. Chemotherapy can easily be delivered to such clinics from pharmacies specialising in “outsourcing”.

Home chemotherapy frees certain suitable patients to go to work or school while receiving chemotherapy through infusors and pumps. Such programmes are fairly limited. Could we not invest more in these? In the same vein, why are we not working harder on producing additional oral chemotherapy drugs?

Time is precious, even more so when it is short. It is the healthcare providers’ mandate to ensure that not even one second of our patients’ time is wasted. With a little imagination and a lot of effort we could do much better for our patients. There really is no time to lose. ■

This article was authored in a private capacity and should not be interpreted as reflecting the official position of the Israel Ministry of Health

Reference
1. Yabroff KR, et al. Patient time costs associated with cancer care. J Natl Cancer Inst 2007;99:14-23.



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