Whilst caring for my father (in 2007) I had a great deal of trouble getting him pain relief. having moved him from a retirement home to a Long-Term Care home - we were quite frustrated. In this day and age there is no reason that anyone should be in pain. Palliative care at home has many benefits, but other issues.
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."
I found that it was the nurses around Dad that controlled the amount of pain medication he got. In Long-Term Care (LTC) the doctors only did regular rounds, and if I felt Dad had more pain the nurses would phone the physician and tell them what my father needed. Sight unseen. Extra visits were not made. No one, it seemed, understood about palliative care and the 'normal' progression of pain control.
It occurs to me that the agitation Dad had was significant. The message I got from the nurses was that he needed an anti-anxiety drug (which does not relieve pain). I now know that he was agitated BECAUSE HE WAS IN PAIN. Why would he NOT have been in pain? My father, with his arthritic knees was not mobile any more. His knees had probably seized up. He had bed sores that were raw. Likely, so the literature says, he had headaches from the tumour.
He was totally unable to articulate his pain. This was part of his delirium, and later his dementia. It is no wonder. I blogged about this last month but it needs to be said again. There is a disconnect between the centres of the brain that can identify pain and it comes out in other ways. As a family member you must advocate, since you know your loved one best.
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
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
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.
Barriers to pain management
- Failure of physicians to understand pain management
- Failure of nurses to understand individual signs of pain
- Lack of patient-centred care
- Poorly coordinated health care
- Red tape
- Lack of accountability of Primary Care Teams
- Misguided focus on a 'cure' rather than quality of life
- 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
- 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.