Mrs. K. is a 55 year-old woman, married with two teenager daughters. She was diagnosed with breast cancer 7 years ago. Despite all available treatments (surgery, radiation and chemotherapies), her disease progresses and she develops metastases to the liver, bones and brain. She is now admitted to the Medical Oncology Ward because she and her family can no longer manage her care at home. Mrs. K. is told that there is no further treatment that can be done and she is devastated by the news.
Before, we discuss how this case can be best managed, let’s look at facts: 70% of patients with advanced cancer have pain. The World Health Organization estimates that 80% of people who die from cancer worldwide experience pain that is not adequately managed. Even in the most advanced western countries, at least 25% of cancer patients will die in pain. Multiple factors (patient, family, health professional and system related) account for this.
Dr. Cicely Saunders, founder of modern hospice care, visualized pain associated with the dying process as “Total Pain”. Total Pain has 4 basic elements or components. These components (alone or in combination) influence patient’s perception of Total Pain.
1. Physical Pain, the most familiar component of Total Pain for doctors who care for the dying. Pain can be acute or chronic and can be due to direct disease-caused damage of bones, muscles, nerves, or internal organs, by the drugs/ therapy one takes or by general complications such as decrease in blood pressure, heart rhythm irregularities, inability to eat etc. Appropriate medications for pain and associated symptoms such as nausea, sedation, constipation or itchiness are a must.
2. Affective or emotional discomfort. Numerous causes of anxiety can be related to poor pain control, altered metabolic states due to medical conditions such low blood sugar, bleeding etc, quick reduction of certain medications, increase in pre-existing anxiety. Also severe anger or depression can contribute to Total Pain.
3. Interpersonal interactions. The dying patient may be concerned about changing appearance, fear of abandonment by family and/or doctors etc. On the other hand relationships with others may be a source of distress, for example previous marital disagreements may become more intense, patients could be estranged from the family of origin or have mounting financial stressors.
4. Non-acceptance. Acceptance at the end of life means that the dying person acknowledges that death is imminent. Late Dr. Buckman, a well known Canadian oncologist and TV/media personality, offered a guide to doctors how to anticipate patients’ acceptance of their finality. In the first stage patients face the threat of death and their reactions depend on their basic personality. These reactions could include fear, shock, anger, guilt etc. In the second stage most patients resolve their anger and denial, but may fall into deep depression. In the third stage the dying person accepts the imminence of his/her death.
Dr. Hay looked at spirituality (function of personal values with no necessary associations with religion) at the end of life. Individuals may suffer spiritually due to different forms of pain (physical or emotional) or because they have diminished inner resources. Their own personal belief system may be such that either causes increased suffering or to the contrary decreases their suffering. Finally some dying patients make specific religious requests at the end of life that actually help them in obtaining a sense of spiritual well being.
Altogether, good pain management at the end of life applies to the concept of Total Pain.
Let’s continue now on our case in an effort to understand the Total Pain management concept.
Mrs. K. is referred to the Palliative Care Team. She is bed bound by physical pain from her bone metastases and serious fatigue. She is also very upset by the thought that her daughters will grow up without their mother and concerned her husband will be unable to cope without her. The Palliative Care Team manages her pain with strong pain killers (opioids) and some other drug specific for bone pain. A team specialized in grief and bereavement helps facilitate a discussion between Mrs. K., her daughters and her husband regarding her advanced illness. Mrs. K. is now accepting the inevitability of her death and feels calmer. Gradually she starts developing a decreased level of consciousness and other changes as she is approaching the last hours/days of life. She is moved to a private room where her family and friends can be with her at all hours. Medications are given now through other routes than in the form of pills. The staff is supportive and helpful as they prepare the family for Mrs. K.’s imminent death.
End-of-life care and Total Pain management does not have to relate to cancer only. As we grow older, multiple diseases will ultimately lead to our death. The concepts discussed here have universal application.
The case report I used here is modified by a presentation given by Dr. Giovanna Sirianni, Staff Palliative Care Physician, Princess Margaret Hospital/ University Health Network (February 27, 2007), while the reference to the Total Pain concept is derived from a paper (Leleszi and Leawandowski. Pain Management in End-of-Life Care, JAOA Suppl. 1; Vol. 105; #3; March 2005).
Angela Mailis Gagnon, MD, MSc, FRCPC(PhysMed)
Director, Comprehensive Pain Program,
Senior Investigator, Krembil Neuroscience Centre
Toronto Western Hospital,
Chair ACTION Ontario