I know. My late father's ears were clogged, his hearing aids were not working, then he lost them, and we were unable to convince the powers-that-be that he was in pain. He suffered for weeks, with predictable headaches, I am sure, from his brain tumour progression. I was unable, until the final days, to get him on any pain killer strong enough to assuage his pain.
Quality End-of-Life Care:The Right of Every Canadian. This subcommittee made recommendations regarding palliative care, made in the 1995 report, Of Life and Death.
The report says, in part:
"Many witnesses repeatedly indicated that pain control techniques are not being adequately used and, often, sufficient medication to control pain is not being provided. Several witnesses suggested this is due to a lack of training and education of medical professionals in the area." There are so many myths around pain relief, and some front line Primary Care staff do not understand this issue. The Quality End-of-Life Care Coalition of Canada (QELCCC) believes that all Canadians have a right to die with dignity, free of pain, surrounded by their loved ones, in the setting of their choice.
Advance Care Planning is a vital part of preparing for end-of-lie and quality of life on the part of family and friends. All of the Hospice organizations have trained volunteers who will help thos who want family to have a 'good death'. As a Hospice volunteer and caregiver for cancer-ridden parents, I have seen many instances in which Primary Staff do NOT understand death and dying.
The Canadian Hospice Palliative Care Association (CHPCA), the Canadian Society of Palliative Care Physicians and the Alzheimer Society of Canada have strong beliefs around quality of palliative care, including respect for palliative patients and their families. Many who suffer pain have complained that physicians do not understand their pain and cannot ameliorate it properly. This is wrong. It is up toe caregiver to advocate for family members.
As I have written previously, they confirm what I say,
We also believe that every health care provider should have basic competency in providing end-of-life care and that every health care institution should ensure quality at the end of life for all of those who will die in institutions. We believe that the option of staying at home as long as is possible, and perhaps dying at home as most Canadians wish, needs to be supported with increased resources and specialized hospice palliative care resources.
Each year, more that 259,000 Canadians die and, with our aging population, that number will grow. By 2026, 330,000 will die each year.
Be Aware Be vigilant and take note of new symptoms: confusion, falls, loss of independence, incontinence, depression.
If patients have a history of delirium, then prolonged sedation, mechanical ventilation, and acute respiratory distress syndrome, they are at risk psychologically: comorbidities may include posttraumatic stress disorder (PTSD), anxiety disorder, and depression. Families and caregivers may also have depression and anxiety, as I well know.
There are two different categories of pain: acute and chronic. Chronic pain, from chronic diseases, last a long time (3 - 6 months or more) and results in sleep disturbances, anorexia, personality changes or work inhibition.
Causes of chronic pain: arthritis, stress fractures, diabetes, cardiovascular issues, muscle spasms, constipation, oral pain, bruises or skin tears (common in ailing seniors), lymphedema (swelling of limbs), shingles.
Acute pain has a definite pattern of onset, it last for a limited amount of time, e.g., during palliative care. It results in the fight or flight response, pupil dilation, increased sweating, respiratory rate, heart rate, as blood shifts from viscera (organs) to muscle.
Treatment needs to be addressed rapidly with a comprehensive management approach. There are other types of pain:
anticipatory pain - fear of the unknown, expected experience, causes fear and anxiety
incident pain - when a patient is shifted in bed
remembered pain - triggered at certain times of day by particular past events
Pain Thresholds These can be lowered in a previously pain-tolerant person. When you have discomfort, insomnia, stress, fatigue, anxiety, sadness, depression, boredom, or social isolation. We can increase pain thresholds by dealing with and managing pain, and symptoms early and swiftly.
Symptoms of pain Loss of appetite, anxiety, bleeding, constipation, cough, confusion, dehydration, depression, diarrhea, dysphagia, dyspnea, hiccoughing, intolerance of sheets on their legs, sweating, nausea, vomiting, pruritis, insomnia, mouth pain, skin problems, seizures, urinary frequency, weakness. Watch for changes in expression, a change in behaviour, physical, intellectual, emotional spiritual pain:
being very quiet or moaning, rocking
being friendly to now being combative
from being cheerful to being sad
eating well then refusing food
sleeping well to insomnia
gestures: wringing of the hands, fidgeting with clothes, "pleating", clenching fists, flinging arms about, reflexive jerking, rubbing a body part, rhythmic body movements (banging on a table)
holding onto a chair for security
tossing and turning in bed
changes in body posture: slouching, slow shuffling, tense posture, rapid gait, tense sitting or lying positions
Barriers to treating pain:
personal, preconceived prejudices on the part of the patient, health care professionals ( PSW, nurse, physician, institution), caregivers, family members
myths around pain management - that it is 'normal'
myths around dosages
myths around delivery of pain relief - oral vs. shots
myths around addictions, dependence, tolerance
Myths around pain
personal, preconceived prejudices on the part of the patient, health care professionals (PSW, nurse, physician, institution), caregivers, family members
pain is 'normal'
dosages depend upon the individual "Pain is whatever the person says and occurs whenever the person says it does" (McCaffery, 1999)
delivery of pain relief - oral vs. shots are best
myths around addictions, dependence, tolerance of pain
Busting myths around pain
We feel pain when asleep
A palliative care patient will not become addicted and deserves pain management
All seniors do not have pain
There is no ceiling dose for pain -we need not wait exactly 4 hrs. for another dose, or remain at a particular dosage over time
Anxiety is a sign of unmanaged pain
Such publications as The Fundamentals of Hospice Palliative Care (2007) speak of pain as a " complex biological event that affects the person, the family, the community, and society." When a loved one suffers, we all suffer. It is up to a family member to advocate for those who cannot speak for themselves. Sometimes deep pain, as affected by psychological, biological, sociological, spiritual or practical factors, can increase without interventions. We need to be assertive and advocate for loved one. Record pain symptoms in a medical diary and do not stop until you are satisfied that the pain is being managed. You cannot overmedicate and Tylenol will not do it for many folks. ~~~~~~~  A Guide to Advance Care Planning The government of Ontario has produced the Guide to Advance Care Planning as part of Ontario 's Strategy for Alzheimer Disease and Related Dementias....
 Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P. A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association, 2002.