Pain Management in End-Of-Life Care

TW- Description of the dying process, mention of drug addiction/dependency

Intention- To assist in educating the public about appropriate pain management protocols during end-of-life care and to dispel some of the myths around the use of pain management medications. The aim is to help loved ones and care staff to become more familiar with the needs of the dying person so that the dying person can have a peaceful, comfortable transition.

Let us begin with the premise of understanding the various stages of living and dying.

There is the healthy, living person, there is the person in treatment with possible prognosis of recovery, the terminally diagnosed person and the dying person. All of these people will have different needs and their bodies will all respond in different ways.

For the purpose of this article, I will exclusively be discussing the needs of the dying person. That means, someone who is weeks, days or hours from death, who has no chance of recovery and their body has begun the shutting down phase. This may also be referred to as the “actively dying” phase.

 We first need to start by understanding that the body of a dying person does not operate the same way the body of someone who is not dying.

A dying person is someone whose body is actively shutting down. There are many variations on how this presents, but typically, the person may be sleeping a lot or even unconscious, they aren’t very interested in food or drink or not at all, their breathing, heart rate, temperature and digestive functions all change and you can tell that everything seems to be behaving a little differently than it normally did for that person.

What this also means is that things that might look uncomfortable to us, could be quite normal for a dying person. Some examples could be, gaping, dry mouth, dehydration, unusual breathing such as rapid breathing or even Cheyne stokes breathing, restlessness (particularly in the early stages of dying) whisper talking and finger twitching.

What it also means is that the usual physical signs of discomfort that would normally present in someone, such as moaning, clutching at a painful area, facial grimacing, may not present in a dying person if they are in discomfort.

So how do we know if a dying person is in pain or not?

Rule number 1- If in doubt, provide relief. There is a common misconception that providing pain relief (particularly narcotics) will “kill” the dying person. All to often, I have heard Nurses worry that the dose of morphine they provided to a dying patient in the hours before their passing was what killed them. This simply is not true. If someone dies within a few hours of a medication dose being given, often, they hadn’t even absorbed that dose, let alone, died from it.  The truth is, the dying person is…well, dying. Their condition is bringing their life to a close and pain management is not going to kill them. In fact, the dying body often needs more pain medication in order to achieve relief than a normally functioning body because the systems that carry the medication to the pain receptors are not operating as they normally would.

Best Practice- Best practice would be to look at the diagnosis of the person. Look at their history. What is their condition? When they were conscious and awake, were they experiencing pain or discomfort? Had they been on a pain management regime before they entered the dying phase? If so, then we could safely assume that the pain management regime should continue, and in many cases, increase in order to provide the same relief.

Staying ahead of the pain- If the person is on a pain management regime, it is important to keep up the doses at regular intervals to avoid “breakthrough” pain. What that means is providing pain relief BEFORE the pain rises to excruciating levels in order to maintain a level of peace and comfort.

I’ll tell you a little story. In 2018, I had a car accident that resulted in a pretty nasty break to my arm which required surgery. After surgery, I was sent home with a slew of pain management drugs. Now, of course, I am concerned about drug dependency and also, just being “out of it” all the time, so naturally, I was conservative with my medication use. What I discovered first hand was this. If I waited until the pain was at a level 6 or above to take the medication, it would take hours for the pain to come down and often, it would be 4 hours later, I’m still in extreme pain and taking a second dose of the meds. Being in that level of discomfort, essentially rendered me completely dysfunctional, I would become extremely tired and of course, unable to “think straight”.  However, if I took the meds when I was at a level 3 pain, then the meds did their job. Within half an hour, the pain subsided to a manageable level and, although I was drowsy from the meds, I could at least function around the house and practice my activities of daily living. This also meant that I could recover faster because my body was not exhausted from the pain.

The same is true for someone who is dying. Keeping up the schedule is vitally important for the dying persons comfort and peaceful transition.

Dying is hard work, but our body knows what to do and how to go through this process. All we need to do as caregivers is to aid in making that process as easy and peaceful as possible.

Should we provide narcotic pain relief to a dying person with a history of drug addiction? Absolutely YES. Their addiction history is no longer of concern when they are in the actively dying stage of their journey. The concern of developing or relapsing drug dependency or addiction is no longer a concern because the person is dying.

Are you going to overdose the dying person? Most likely not. Any concerns of over-medicating can be alleviated by sticking within the parameters of the instructions provided by the prescribing physician. And ultimately, if you do accidentally provide one dose more than was prescribed or give the dose an hour earlier than is prescribed, the dying person isn’t going to overdose from that. Remember, we are talking about someone who is already actively dying.

Does every dying person require pain management? No, not at all. Dying itself is not a painful process. If a person is dying a natural death, chances are, they are not in any pain or discomfort. However, if someone is dying from or with a painful disease, chances are, they will need some support to manage their discomfort. Also, someone who is in respiratory distress through the dying process could benefit from the use of narcotics which relax the muscles and ease respiratory distress.

I hope this has bought about some level of understanding and allows those who care for the dying to feel comfortable around providing pain relief.

If you would like to listen to experts in the field, RN’s and very experienced end-of-life carers, Suzanne O’Brien RN and Barbara Karnes RN speak on this particular subject on Suzanne’s podcast, “Ask a Death Doula”.

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