Pain is a very individual experience, which makes it pretty tough to measure objectively when only the person experiencing the pain can describe it. This makes the job of managing pain in a palliative patient particularly challenging. The goal of palliative care is to relieve and prevent suffering in patients throughout their illness. An important focus for caregivers is to assist patients who are nearing the end of life by managing their pain and disease symptoms while also helping them remain both lucid and comfortable.
There are many things that affect the amount of pain a person feels as a disease progresses. Palliative care uses an interdisciplinary approach that includes input from physicians, pharmacists, nurses, chaplains, social workers, psychologists, rehabilitation therapists, music therapists and other health professionals who formulate a plan of care to relieve the suffering in many areas of a patient’s life.
“We look beyond the physical to other factors that may be affecting pain,” says Dr. Cheryl Nekolaichuk, counselling psychologist at the Tertiary Palliative Care Unit of the Grey Nuns Community Hospital in Edmonton. “In some cases, we can reduce the amount of pharmaceuticals required to keep a person comfortable by helping them deal with issues like anxiety, despair or fear. Reconciliation of relationships or counselling to resolve issues and reduce stress can help a patient reach a place where he or she can be at peace.”
Palliative care is a relatively new specialty of medicine, but Canada, and in particular Alberta, is leading the way in advances in this field. Dr. Balfour Mount, a Canadian physician, is considered to be the father of palliative care in North America. He coined the term “palliative care,” which comes from the word “palliate,” meaning to improve the quality of something. If you’ve been ill or had surgery, you may have been asked to assess your pain on a scale of one to 10. In Edmonton, researchers are continually working to improve cancer patient care and have worked extensively on scientific methods to assess pain and symptoms. Modern cancer care researchers in palliative care facilities worldwide use the Edmonton Symptom Assessment System (ESAS) and the Edmonton Classification System for Cancer Pain (ECS-CP).
Dr. Eduardo Bruera developed the ESAS and Nekolaichuk and Dr. Sharon Watanabe, director of the Department of Symptom Control and Palliative Care at Edmonton’s Cross Cancer Institute, revised it. The system is useful and it gives a quick way for health-care providers to more accurately measure symptom intensity in patients with advanced cancer. It does this by including pain and eight other common symptoms of advanced cancer, with the option of adding a tenth patient-specific symptom to assess as a whole package.
Nekolaichuk and Dr. Robin Fainsinger developed the ECS-CP. (Fainsinger is a specialist in palliative care medicine at the University of Alberta and is a clinical director for the AHS Regional Palliative Care Program.) Their work has its roots in that of Bruera’s. The classification system enables clinicians to better characterize a patient’s cancer pain and guide treatment and allocation of resources. Having a more scientific description of pain also helps researchers assess the outcomes of clinical trials in cancer pain management and ultimately produce better pain relief.
“Palliative care is an intellectually challenging field to be involved in because it is always changing,” says Watanabe. “The palliative care team works together to see the patient as a whole person and to care for the whole person. We try to make a difference for patients and their families at a very difficult time and there is a great sense of reward that comes from having that kind of impact.”
Families are an important part of cancer care.
It is common for family members to feel a wide variety of emotions, including helplessness and uncertainty about how to help a loved one who is receiving palliative care and nearing the end of his or her life. Dr. Nekolaichuk and Dr. Watanabe suggested some tips for families to take part in patient care while coping during this difficult time.
Provide a sense of home: Bring in pictures, photographs, a special quilt or comforter to make the palliative care room as homey and familiar as possible.
Keep the patient informed: Allow patients to be as involved as possible in making decisions about their care. This gives them a sense of dignity and control over their situation.
Listen to your loved one: It shows that his or her words hold value and that you care. Inform the health-care team if you notice that the patient is becoming confused as this may be improved through a change in the treatment plan.
Talk to the health-care team: No one knows your loved one as well as you. Let health-care workers know how to best support the patient.
Recognize your role: Realize that the little things you are doing are important. Just being there is an incredible support to a patient.
Let conflicting emotions happen: Family members often begin the grieving process before their loved one passes on. Realize that you will have many feelings during this difficult time and give yourself permission to have those feelings.
Care for yourself: It’s important to take care of yourself. Take breaks and recognize that it’s OK not to be there all the time. Try to keep up a semblance of structure in your life.
Get support: Ask for help if you need it from family, friends, community or professional caregivers. Family members experience as much stress as patients do. The palliative care team is there to support the patient as well as family members. Sometimes it’s good to talk to a chaplain, psychologist, social worker or therapist.
Don’t judge: There is no right way to cope. Some family members just won’t be able to be there for whatever reason. Let them deal with things in their own way.
Say the important things: Find ways to say and do important things with your family member. You can plan a special evening, weekend or day together – even if you never leave the palliative care room. You may want to say that final goodbye to your loved one.