Is Death Painful?

If you are facing a terminal illness or have a loved one who is nearing death, you may wonder or worry if dying will hurt. It's true that death can be painful for some people. But it's also true that there are ways to help manage and ease pain in the final days of life.

No one knows exactly what someone's final moments will feel like. The gradually increasing periods of unconsciousness someone experiences as they are dying may feel like going to sleep. There may also be periods of wakefulness and confusion or disorientation. Pain may or may not be part of the process.

This article discusses how end-of-life pain may be experienced and described. It also presents some options used to treat pain, and what palliative care and hospice may offer for you and your loved one.

Does Dying Hurt?

Dying doesn't always hurt. The amount and type of pain there is at the end of life can differ. The specific diagnosis and cause of pain are factors. So are treatment, support, and the person's own unique experience.

Up to half of all people with cancer experience pain. That number rises to about 80% in the advanced stages of cancer. Some studies have found that between 56% and 82% of people with cancer have pain that is not adequately managed.

What Causes Pain at the End of Life?

Pain at the end of life can have a few different causes, such as damage from the terminal illness itself or from procedures such as surgery. For some people, pain is made worse by psychological factors like anxiety about death or concern for loved ones.

Impact of Pain at the End of Life

Pain that isn't properly treated can cause more than discomfort. It can make other symptoms, like shortness of breath and anxiety, much worse.

Emotionally, pain may cause you or your loved one to be irritable. You may find it hard to concentrate, or that the pain is a barrier when you want to have meaningful talks with your loved ones. It also can lead to feelings of loneliness and emptiness.

Pain also can disrupt more practical matters. It can make some tasks hard to do, like attending to your legal affairs before death or making amends with loved ones. Ultimately, it can even interfere with saying goodbye if your pain, or that of your loved one, is not well managed.

For those left behind, the memory of the dying process will remain. If your end-of-life memories include watching your loved one's uncontrolled pain, it can result in prolonged grief.

Reporting Pain Is Important

Healthcare providers need to understand your pain before it can be treated. Knowing how to communicate the type and level of pain is key.

Questions about your pain are likely to include where it is and when it happens. The impacts on your quality of life—eating, sleeping, and talking—all need to be considered.

Your healthcare team will usually use a pain scale to try to get an objective, or standard, measure of your pain. You or your loved on may be asked to rate your pain on a scale of 1 to 10.

A 1 rating means you have almost no pain; a 10 rating means the worst pain imaginable; and the numbers in between will rise with more pain. Keep in mind that a "4" for you may seem like a "7" for someone else.

That said, the pain scale makes it easier to rate and treat levels of pain. It's also useful to assess how well pain medications or other pain control measures are working when you rate it before and after any intervention.

Signs of Pain in Someone Who Is Dying

If your loved one isn't able to communicate, it's important to look for signs of pain so you can talk to their healthcare team about pain management. Some important signs of pain include things like:

• Mood changes such as agitation
• Refusing food or drink
• Seeming withdrawn or quieter than usual
• Avoiding eye contact
• Showing signs of distress or discomfort
• Appearing tense or rigid
• Frowning or grimacing

Healthcare providers can help assess pain in someone who can't communicate using measurements such as:

• The Wong-Baker FACES Pain Scale, which relies on pictures and can be used for children or adults.
• The COMFORT scale, with six behavioral measures, which is often used to assess pain in children and can be used when people are sedated or otherwise can't describe their own pain
  

Management of End-of-Life Pain

Some healthcare providers are more skilled in pain management than others. Specialists who treat pain are familiar with widely used guidelines when they are dealing with end-of-life pain.

For example, the World Health Organization (WHO) created a model for treating pain. It is designed like a ladder, with the simplest step first. If this step is not effective, your team can move to the next one.

According to WHO, the pain for roughly 80% to 90% of people is managed within the first three steps.

The steps in this model for treating pain include the following:

1. Non-opioid drugs, such as aspirin or Tylenol (acetaminophen), should be tried first. This may be done with or without other drugs that are used to reduce fear or anxiety at the same time.
2. If the pain gets worse or doesn't go away, an opioid meant for mild to moderate pain, such as codeine, may be added. Non-opioids and other drugs, as in Step 1, may also be used.
3. If pain still gets worse or continues, a stronger opioid for more severe pain can be used. Morphine, for example, can be given along with non-opioids and anxiety drugs.
4. Other treatments can then be tried if pain is not relieved. This may include nerve blocks and palliative chemotherapy.

Alternative treatments such as acupuncture and massage do not replace conventional ways to manage pain. Still, they may be used along with traditional approaches to pain control.

Drugs to control pain are more effective when they are given on a regular schedule. This means end-of-life pain should be treated around the clock instead of just when you or a loved one have pain. This approach to pain control works better than trying to "catch up" to pain that's already there.

Reasons for Undertreatment

Pain can and should be treated well at the end of life. According to WHO, patients have a right to have their pain treated. Still, many don't—and for a variety of reasons:

Drug-Related Reasons

In some cases, the concerns about pain management drug risks may limit proper care. Some of these drug-related reasons center on:

• Side effects: All medications have side effects. Symptoms such as nausea, constipation, and drowsiness may cause people to want to avoid pain drugs. For example, your loved one may want to be alert to spend as much time as possible with you, rather than sleeping due to the drugs.
• Tolerance: Some people fear that if they use medications now, the drugs will fail to work later "when they really need them." The truth is that if a drug tolerance develops, other or stronger medications can be used.
• Addiction: People who are dying, family members, and healthcare professionals alike often carry a concern about addiction. This is a valid concern in some cases, but not during end-of-life care.
• Early death: Studies have found that treating end-of-life pain with narcotics and even palliative sedation will not shorten life.

Patient-Related Reasons

There are other reasons why people may not receive proper pain control. They have to do with choices about accepting the drugs, behavioral priorities, or even practical matters. For example:

• Denial: Some people are afraid to admit that their pain is getting worse. This is because it often means that their condition is getting worse.
• Desire to be a "good" patient: Some people don't want to ask for pain medications. They fear that they will be viewed as a "bad" patient and don't want to bother the healthcare team. It's critical to keep in mind that it's their job to help manage pain.
• Cost: Pain medications add yet another cost when finances are often tight due to illness.

Provider-Based Reasons

Sometimes it's the healthcare providers, not those who are ill, who may limit access to pain control. Reasons for this may include:

• Awareness: A provider isn't with you or a loved one all the time. They may not see the true level of pain during the typically short times they are present. Be sure to tell them about your pain. Don't assume that they're just not giving it to you because you don't need it.
• Lack of training: Some providers don't have enough training on how to manage pain at the end of life.
• Fear: A provider may hesitate to prescribe strong painkillers due to fear of reprimand by medical boards. This is an increasing concern related to opioid use and abuse.

How Palliative and Hospice Care Can Help

If your healthcare team is not successful in managing your pain, you may want to ask for a referral for palliative care.

This type of healthcare team is highly skilled in pain management and comfort care. It typically includes medical professionals, along with social workers and chaplains.

Palliative care aims to improve quality of life and limit suffering at any stage of illness. In the U.S., this care may shift to hospice teams after attempts to treat an illness are exhausted and the end of life approaches.

You or your loved one may find it better to reach out to a palliative care team at an early stage of the illness rather than waiting until the prognosis qualifies you for hospice care.

You can have access to a palliative care team in many forms: a hospital, a nursing home, a hospice facility or clinic, and in your own home.

The Affordable Care Act (ACA) provided incentives to develop palliative care teams, so they are more available than in the past. The care is covered under Medicare Part B for inpatients and outpatients.

You also can have hospice care in your home, or at a hospice facility or nursing home. Hospice and related treatment are covered under the Medicare hospice benefit, as well as by the Veterans Administration and Medicaid.

Ask your healthcare team about these options. You also can search online using the palliative care provider directory maintained by the Center to Advance Palliative Care. You can find a hospice care provider through the National Hospice and Palliative Care Organization database.

Coping With Pain

Your emotional and spiritual needs play a role in managing pain. Music, pet therapy, favorite foods, and special outings with family are all ways to help meet these needs.

Fear can make the experience of pain worse, all the more so if your loved one's greatest fear is of dying alone. Being there, touching them, holding their hand, and helping with care can make a difference. Talk by phone or through online platforms, too, if you cannot be with them.

A social worker can help with family communication, advance directives, funeral planning, or managing healthcare paperwork. (An advance directive is a legal document created to inform other people what medical decisions you would like to make in the event you cannot express your wishes for yourself.) This can reduce anxiety that seems to be making the pain worse.

A chaplain who is part of a palliative care team can help with any spiritual needs that are important to you or your loved one. You also may want to reach out to trusted clergy or counselors acquainted with the end-of-life spiritual traditions and beliefs held by your loved one.

Summary

End-of-life pain is quite common. In fact, most people living with cancer in its advanced stages will experience pain. While all people are different, they share the need to accurately communicate pain to ensure it is properly managed.

The 1 through 10 pain scale is the best way to tell your healthcare team about your pain. Don't hesitate to do so, even if they haven't asked you about it. People have a right to pain control, as defined by WHO guidelines. Speak up if you are in pain.

Still, for a variety of reasons, many people do not receive adequate pain management as part of their end-of-life care. If that's the case, palliative specialists and hospice healthcare teams may be able to better help you and your loved one manage end-of-life pain.