End-of-Life Pain Management
* To be effective, pain medicine needs to be given on a regular, around the clock, schedule.
* Over time the original dosage may have to be increased.
* Everyone’s pain is different so everyone’s pain medicine and amount will be different.
* There is no standardized medicine dosage for pain. It takes time to find the correct pain medicine and the correct amount.*
*The biggest fears about taking narcotics for pain management is fear of addiction and overdosing.
* Most medicines given by mouth can be given rectally. Some pain medicines can be made into creams and rubbed on the skin.
* Generally there isn’t a need for needles in end of life pain management.
* Pain doesn’t stop when a person is non-responsive. Continue the pain management schedule until death.
This intimate knowledge of the patient is valuable and should be shared with care providers. However, showing such signs does not always indicate pain and the person may instead be scared or frustrated. All sounds and changes should be considered for what the person is trying to communicate.
“My siblings and I learned to recognize the subtle signs – wincing, frowning or increasing agitation – that indicated our father was in pain or discomfort. Having an end of life comfort care plan in place meant we could request an extra or increased dose of morphine to alleviate his suffering.” – Barbara Dylla, a former caregiver in Montreal.
It is important to remember that people with dementia feel pain, just like everyone else. Major causes of pain often stem from immobility, arthritis, infections or a combination of conditions, referred to as co-morbidities. A person who has constant pain needs regular pain medication to control it and be comfortable.
In order to ensure that the person with dementia is not experiencing untreated or inadequately managed pain, it is important to look for non-verbal signs of pain such as grimacing, moaning, uncharacteristic behaviors or physical changes such as sweating or elevated heart rate. A change in the person’s behavior, which may indicate pain, is often noticed first by family and friends.
As a person with dementia progresses through the disease, they will become less and less able to express themselves verbally, thus making it increasingly difficult to tell others when they are in pain. As a result, pain often goes undetected and untreated, causing the person with dementia to communicate their distress through their behavior, such as becoming agitated, withdrawn or combative. You may be able to find out if the person is in pain by asking direct simple questions such as “Are you in pain?”, “Is it sore? or “Does it hurt?” but often the person with advanced dementia will not be able to answer your question verbally.
What is “Total Pain”?
Excerpt from Pain Management in End-of-Life Care, Leleszi JP, DO:
"Total pain is the sum of four components: physical (pain), emotional discomfort, interpersonal conflicts, and nonacceptance of one’s own dying. These four components may individually or in combination affect a patient’s perception of their total pain. Lack of understanding of the influence of each of these four components may result in less-than-optimal pain management at the end of life."
The “gold standard” of pain management is constant pain assessment.
Pain is whatever the patient says it is. Simply asking patients about their pain is the best way to obtain this information. Patients describe non-physical components of pain as “discomfort.” Dr. Ira Byock wrote that in dying persons, pain is never purely physical. Things related to when and how they will eventually die influence their pain. These things include being abandoned; becoming undignified in terms of what they do, how they look, and how they smell; being a burden to their families—not only a physical strain, but also a financial hardship; and dying in pain alone.
Any one of these concerns causes individuals to suffer and therefore must be addressed to provide good management of pain symptoms.Physical pain is not universal with every death, but some discomfort is usually present.
When assessing a patient’s pain, staff will often consider its:
A terminally ill patient may often have different types of pain in several locations. However, not all complaints of pain may be disease-related. For example, a patient might complain of general soreness thatmay be caused from being bedridden and immobile. To accurately assess a patient’s pain, it is best to ask the following questions:
Location : Where is the pain?
Onset : When did it start?
Onset : How did it start or what caused it?
Intensity : Average pain level – What is the intensity of the pain? Is it mild, discomforting, distressing, excruciating? A commonly used pain rating scale is the 0-10 pain scale such as the examples shown:
You can implement the 0-10 pain scale by first explaining that zero means no pain and 10 is the most unbearable pain ever experienced. Ask the patient to rate her pain between 0 and 10. Visualization of the pain scale sometimes assists the patient to better assess her degree of discomfort. You can make a 0-10 pain-rating scale by drawing a horizontal line on a piece of paper. Write a zero on one end and a 10 on the opposite end. Fill in the numbers in between. The 1-4 range is considered to be mild pain, the 5-6 range is moderate pain, and the 7-10 range is severe pain. However, one patient may be able to tolerate pain in the 6 or 7 range, for example, while another patient may need pain relieved to a 1 or 2 in order to be comfortable. Again, pain is subjective and individualized. (The Final Journey Pg.80)
For Healthcare Practitioners
Patient and family: Denial of pain by the patient and family due to some of the following fears:
– Addiction to pain medications, if taken regularly
– Side effects associated with pain medications, especially those that may interfere with staying alert and clear
– Increasing pain as a sign of disease progression
– Belief that pain is a natural part of an illness and cannot be relieved
– A sign of weakness or being an “increased burden” for the caregiver, etc.
Those medical staff who do not specialize in hospice and palliative care for the dying may not recognize the “holistic nature” of pain especially at the end of life which not only includes physical pain, but often includes the psychological, social, emotional and spiritual effects of pain. Recognizing and addressing existential pain is of paramount significance in relieving the distress of the terminally ill. Hospice care is a holistic approach to the pain and symptom management of the dying with the sole purpose of dignified and loving comfort care for the patient and his or her family.
Pain medications, if given correctly, can give the suffering patient relief without many
of the side effects. There is a saying among hospice professionals regarding pain
management, “Start low; go slow.” This is principally to assist the patient achieve
better levels of pain control without experiencing distressing side effects. Please note
that one side effect of taking any type of opioid medication for pain includes constipation.
Of all the possible side effects of taking opioids that may be able to be alleviated in time,
constipation is one side effect that, unfortunately, remains an issue when taking opioids for pain. However, this can be well managed with the use of a “natural” laxative made with senna. *(There are other laxative products as well that may work better, or tolerated better by your patient. Please consult your patient’s hospice nurse regarding this important issue. Your particular hospice will probably have their own regimen for this common side effect.) The object is to stay on top of the problem of constipation rather than wait until it becomes an issue. Most likely, your hospice nurse will prescribe a regular laxative program at the time the patient is first prescribed opioids for pain. This is the usual hospice protocol. In this way, a regular laxative program will keep your patient comfortable BEFORE it becomes a problem and constipation increases, possibly causing nausea, confusion, and other unnecessary symptoms for your loved one.
Relieving pain as far as possible is one of the most fundamental measures to improve quality of life especially at the end of life. We must persistently support and advocate for humane and dignified care of the dying by promoting ethical and effective pain and symptom management -- without exception.
Please Note: For more detailed information on End-of-Life Pain Management and Hospice Care,
please refer to The Final Journey — Complete Hospice Care for Departing Vaishnavas
(Torchlight Publishing, Updated, 2nd Edition).
Your copy of The Final Journey can be purchased on our STORE PAGE.
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