QUALITY OF LIFE

“In the hospital they seemed to think that being terminally ill meant you have to crawl into a corner and die, but there is still a quality to my life.” (Sandra C. — a patient)

A good quality of life can be said to exist when the hopes of an individual are fulfilled by experience. A useful question to ask an ill patient can be “What would you be doing today if you were well?” This can reveal a gap between “life as it is” and “life as I wish it was”. (This applies to well people as well as sick people.)

Objective measurements such as physical independence indexes do not equate with quality of life. For example, a woman with advanced ALS in a hospice was just able to write but was unable to speak, had severe difficulty swallowing and was unable to move her body. Yet she would often write “I feel well today, I am happy.” There was a good quality to her life as far as she was concerned. Quality of life assessed by a patient can and usually does change from day to day, and will depend on many factors including physical comfort.

A sense of well-being can give a good quality of life even if a person is able to do very little.

When a doctor advises against a treatment such as chemotherapy he may be assuming that the reduced quality of life due to side-effects outweighs any advantages in terms of prolonging life. If treatment will simply harm and has no chance of helping, then the doctor has a duty to resist treating (the principle of “do no harm!”). If there is even a small chance of prolonging life, however, a few patients will opt for aggressive treatment. They may opt for quantity rather than quality. It is important to avoid making assumptions about the patient’s wishes by asking the patient.

Various methods of measuring quality of life have been devised, looking at physical, social and psychological well-being. These rating scales can help us to avoid making assumptions. In one study, for example, patients with limb sarcomas were treated conservatively (on the assumption that limb-sparing treatment would improve quality of life), but they had as many problems as those treated by amputation.

When thinking about the quality of life of ill people, it can be helpful to know about some common worries and concerns.

In one study, 250 patients with advanced cancer were asked “What are your main concerns at present?”

            Responses were:

The patients were also asked “Are you making any plans for the future?”, a question which correlated with whether life was felt to be worth living.

          Responses were:

Quality of life cannot be assessed by observation because it is subjective. Needs and concerns are highly individualistic and can vary from day to day. There is some evidence that quality of life is mainly determined by the extent to which the person has come to terms with his situation.

This can be explored with such questions as:

• Do you feel life is worth living?

• Do you look forward to the future?

• Do you feel low in spirits?

• Do you feel afraid?

• Do your beliefs help you?

• Do you get support from your church?

Other important issues concern:

• Symptoms, especially:

  • Pain

  • Poor appetite

  • Nausea

  • Bowel function

  • Breathing

  • Drowsiness

  • Knowledge of disease or treatment

  • Support

• Worries for partner or family:

  • Opportunities to express love

  • Feeling needed

  • Able to share feelings with someone

  • Practical support

  • Contacts outside family

Patients tend to score their quality of life higher than observing doctors and nurses, perhaps because they have lower expectations. The use of a questionnaire on quality of life may itself improve quality of life by encouraging patients to communicate about their problems and thus to make adjustments.

“Quality of life” must not be confused with “meaning of life”.

The author and publisher have taken precautions to ensure that the information in this book is error-free. However, readers must be guided by their own personal and professional standards of good practice in evaluating and applying recommendations made herein. The contents of this book represent the views and experience of the author, and not necessarily those of the publisher.