PSYCHOLOGICAL DISTRESS AND COPING WITH ADVANCED ILLNESS
When someone becomes seriously ill, it usually starts an intense process of medical testing and therapy with treatments that may involve some degree of pain and stress. Understandably, each phase of a major illness has a psychological impact.
For example, the medical testing may be a time of real worry as one prepares for the possibility that the illness is very dangerous. After diagnosis, there may be a period of shock, as well as anxiety and fear.
Active treatments may bring about troubling side effects, perhaps with no certainty of a cure. Throughout these periods, declining physical function, changes in family and social roles, increasing dependence on the health-care system, as well as the threat of death, are all sources of psychological stress.
People use a range of coping strategies during these stressful times. In fact, coping styles may range from trying to avoid reminders of the illness through to thinking about it all the time.
Over the long term, however, people who adopt more active coping strategies, such as seeking support from others, constructive problem-solving, and finding positive meaning, tend to show the best adjustment.
Most people who are told they have an advanced illness will experience periods of anxiety, sadness and grief, and anticipation of loss and death. These can all be considered part of a normal adjustment process, albeit a difficult one.
For many medically ill people, however, these emotions can become quite overwhelming and develop into difficulties in their own right. For example, it has been estimated that about 25% of people with advanced cancer will exhibit depression or anxiety disorders.
These problems are important to recognize and treat. Not only are they distressing, but they also make it more difficult to manage physical symptoms and to face the full spectrum of concerns involved in preparing for the end of life.
QUALITY HEALTH CARE AT THE END OF LIFE
What do people want from the health-care system at this stage? Patients say that, first of all, they want adequate treatment for their pain and other symptoms.
They also want input into treatment decisions to maintain a sense of control and to be treated as a ‘whole person’ by professionals. Most people want truthful information, presented in a way that is respectful of their hopes and fears.
They also want to be prepared for death, having achieved a sense of completion. They also want the burden of care to be lessened for their families while achieving a sense of closure to the relationships they will be leaving behind.
HOW CAN PSYCHOLOGISTS HELP?
The care of people with advanced illness is complex and often requires contributions from several different kinds of health professionals working collaboratively in a team, each bringing special skills. Psychologists can be involved in the following ways:
Stress Management: Different types of relaxation therapies may help to reduce arousal, aid in sleep, and achieve some mental distance from the stress of physical symptoms.
Problem-Solving: People with advanced illness have issues with declining health but they also have practical concerns such as arranging financial transitions, keeping their households running and supporting loved ones who also have to cope.
Some psychological interventions involve structured assistance in setting priorities, breaking problems down into manageable parts, and identifying solutions.
Counselling Support: Counselling can provide people with a non-judgmental, confidential relationship in which they can speak openly about any personal issues that may be troubling them, including fear, anger, guilt, distress around changes in appearance or function, or concerns about family members.
Family Therapy: Different families handle stress in different ways. In some, there may be a history of conflict. Others may have a general style of avoiding the expression of deep emotion.
Within a family, members may not all come to a sense of acceptance of a loved one’s illness at the same time. In each case, family therapy could help to open up genuine communication and assist all members in facing their challenges together.
Psychotherapy: Different types of psychotherapy can be helpful for people with advanced illness.
Supportive-expressive psychotherapy encourages people to express and explore their deep-seated worries and concerns and helps them to identify their own personal ways of dealing with illness. This is typically done in a support-group format with other patients.
Cognitive-behavioural psychotherapy helps people to be realistic in their assessment of situations and to challenge themselves when their own negative thoughts start to become a major cause of distress.
It also encourages people to stay engaged in pleasurable activities as long as they are able, because achieving small goals could contribute to an ongoing sense of fulfillment.
Enhancing Meaning: A ‘good death’ means that symptoms were well controlled at the end of life but also that important psychological, social, and spiritual concerns were addressed.
People want to feel that their lives have made a difference, that they have touched others in meaningful ways, and that they will leave a legacy that lasts beyond their physical presence.
Through thoughtful discussion and life review, people can be helped to conduct a "summing up", find meaning in the experience, and reflect on the important contributions that they have made in their lives.
WHERE DO I GO FOR MORE INFORMATION?
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Fisher R., Ross, M.M., & MacLean, M.J. (2000). A Guide to End-of-Life Care for Seniors. Ottawa: Health Canada.
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The Emotional Facts of Life with Cancer (2003). Canadian Association of Psychosocial Oncology at http://www.capo.ca. (Copies are also available through the Canadian Cancer Society’s Information Service: Toll-free at 1-888-939-3333).
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You can consult with a registered psychologist to find out if psychological interventions might be of help to you. Provincial, territorial and some municipal associations of psychology often maintain referral services. For the names and coordinates of provincial and territorial associations of psychology, visit http://www.cpa.ca/public/provincialandterritorialassociations. The Canadian Register of Health Service Providers in Psychology also has a listing service and can be reached through http://www.crhspp.ca.
This fact sheet has been prepared for the Canadian Psychological Association in cooperation with the Canadian Coalition on Seniors Mental Health by Dr. Keith Wilson. Dr. Wilson is a staff psychologist at the Rehabilitation Centre of the Ottawa Hospital and Associate Professor of Medicine and Psychology at the University of Ottawa.
Revised: January 2009
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