Nothing is more emotionally challenging for a caregiver than coping with the demands of caring for a person who is dying from a painful illness. Shifting the focus from obtaining a cure and regaining health to maximizing the quality of each day and reducing suffering is a paradigm shift for which there isn’t much time to prepare. Much and needless suffering can result when caregivers and teams are not ready to respond to a terminally ill person’s changing needs. Some (not all) need pain control.
Ironically, the medical advances and technology which can reduce or eliminate pain during the final days and weeks of life have been readily available for decades, but much misunderstanding still surrounds their use. Some may hesitant to use these medications for fear of creating a dependency; others worry that their use will shorten life/hasten death. It is necessary to refocus on the fact that the goal of comfort care is comfort: this begins with the removal of or absence of suffering.
In this post I simply convey how on one occasion, with one team of caregivers, some simple explanations cleared the way for positive, appropriate and effective pain control for a man who wished to spend his last days in his own home with loved ones. Explaining the rationale for continuing to administer meds for comfort (morphine, Ativan) on a regular schedule without the gentleman prompting us for medication:
“One way to give meds for pain is simply to take the medicine when the pain gets bad. For example, when you feel the pain of a headache and realize it’s not going away, you take a Tylenol. If it doesn’t work, you may take more. Eventually, you stop noticing the pain and go on to other things.
“A better analogy for giving morphine and Ativan for comfort is when you take a Vicodin after having a tooth pulled. You don’t wait until the Novocaine wears off and you feel the excruciating pain before you take the Vicodin. You don’t wait until you feel the pain, because you don’t want to feel the pain. You know you’re going to need the help, so you take the Vicodin before you feel anything. Then, if the order is for every four hours, you take the next one on the dot of four hours later, even if it doesn’t hurt yet. You do this because you know that if you don’t take the Vicodin before the pain comes, you’ll suffer, and then when the pain is really bad, even if you take two Vicodin, it won’t work as well.
“For the person who is dying, he may take morphine and Ativan. It takes away pain, also anxiety, and helps with the “gurgling” feeling, and the very uncomfortable sensation of not being able to get a breath, as congestion builds in his respiratory tract. Waiting until we see evidence of suffering would be a mistake, because if we give him the meds on a regular schedule, he won’t suffer! We don’t have to worry about giving “too much” medication. If we see that he’s very sleepy a lot of the time, we can adjust the frequency of the doses. For example, if morphine and every four hours and Ativan every eight hours is too much, we can try morphine very six hours and Ativan every eight. Our goal is that he not suffer at all.”
There can be barriers to doing this well. When a person has skilled nursing visits, the nurses can (and should) administer these meds for comfort, but they might not always be aware of the need due to not being with the person as much / as often.
Strategies for overcoming this obstacle: caregivers can remind the nurses, when they visit, that the person needs morphine and Ativan to continue to feel comfortable. Request additional visits from his nurses as needed. Obtain formulations of comfort meds which the caregivers can themselves administer (sublingual, etc.) if caregivers are unable to give medications by subcutaneous injection (as is often the case when unlicensed caregivers are certified to give oral medications).
The most important thing: keep the focus on the person who is ill. This person may want and need to spend the remaining time expressing love, receiving love, celebrating the accomplishments accrued and enjoying the relationships cultivated over her/his lifetime. Reducing suffering makes room for enjoying life. Achieve this with, among other things, mindful attention to administering medications for comfort.