Table of ContentsView AllTable of ContentsDoes Dying Hurt?Impact of PainReportingManagementPalliative CareCoping
Table of ContentsView All
View All
Table of Contents
Does Dying Hurt?
Impact of Pain
Reporting
Management
Palliative Care
Coping
If you arefacing a terminal illnessor have a loved one who isnearing 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 thefinal 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 whatpalliative careand hospice may offer for you and your loved one.
Tomas Rodriguez / Getty Images
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 withcancerexperience 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?
Learn More About Cancer Pain
Impact of Pain at the End of Life
Pain that isn’t properly treated can cause more than discomfort. It can make other symptoms, likeshortness of breathand 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.
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 inprolonged grief.
What to Say to Someone Who Is Dying
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.
Don’t wait to be asked about your pain or that of a loved one. If healthcare providers don’t ask, tell them. Speaking openly and honestly with them about the type and quality of the pain will help to ensure that it is treated.
Your healthcare team will usually use apain scaleto 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:
Healthcare providers can help assess pain in someone who can’t communicate using measurements such as:
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:
Alternative treatments such asacupunctureandmassagedo 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:
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:
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:
Pain Managment for Different Types of Conditions
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 forpalliative care.
This type of healthcare team is highly skilled in pain management and comfort care. It typically includes medical professionals, along withsocial workersand 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.
A 2015 study in theNew England Journal of Medicinefound that symptoms are better managed in people who have outpatient palliative care. They are less likely to be hospitalized and have longer survival times than those who do not.
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.
TheAffordable Care Act (ACA)provided incentives to develop palliative care teams, so they are more available than in the past. The care is covered underMedicare Part Bfor inpatients and outpatients.
How to Recognize and Assess Pain
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.
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.
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.
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.
11 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.National Cancer Institute.Cancer pain.Fallon M, Giusti R, Aielli F, et al.Management of cancer pain in adult patients: ESMO Clinical Practice Guidelines.Ann Oncol. 2018;29(Suppl 4):iv166-iv191. doi:10.1093/annonc/mdy152National Institute on Aging.Providing care and comfort at the end of life.Boerlage AA, Ista E, Duivenvoorden HJ, De wildt SN, Tibboel D, Van dijk M.The COMFORT behaviour scale detects clinically meaningful effects of analgesic and sedative treatment.Eur J Pain. 2015;19(4):473-9. doi:10.1002/ejp.569World Health Organization.WHO’s cancer pain ladder for adults.Han QQ, Fu Y, Le JM, Ma YJ, Wei XD, Ji HL, et al.The therapeutic effects of acupuncture and electroacupuncture on cancer-related symptoms and side-effects.J Cancer. 2021;12(23):7003-7009. doi: 10.7150/jca.55803Lim R.End-of-life care in patients with advanced lung cancer.Therapeutic Advances in Respiratory Disease. 2016;10(5):455-67. doi:10.1177/1753465816660925Schur S, Weixler D, Gabl C, et al.Sedation at the end of life - a nation-wide study in palliative care units in Austria.BMC Palliat Care2016;15,50 doi:10.1186/s12904-016-0121-8United States Department of Justice, U.S. Attorneys, Central District of California.DEA-led crackdown on prescription opiod diversion targets medical professionals with criminal charges, licence revocations.Kelley AS, Morrison RS.Palliative care for the seriously ill.N Engl J Med. 2015;373(8):747–755. doi:10.1056/NEJMra1404684American Cancer Society.What Is an advance directive?
11 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.National Cancer Institute.Cancer pain.Fallon M, Giusti R, Aielli F, et al.Management of cancer pain in adult patients: ESMO Clinical Practice Guidelines.Ann Oncol. 2018;29(Suppl 4):iv166-iv191. doi:10.1093/annonc/mdy152National Institute on Aging.Providing care and comfort at the end of life.Boerlage AA, Ista E, Duivenvoorden HJ, De wildt SN, Tibboel D, Van dijk M.The COMFORT behaviour scale detects clinically meaningful effects of analgesic and sedative treatment.Eur J Pain. 2015;19(4):473-9. doi:10.1002/ejp.569World Health Organization.WHO’s cancer pain ladder for adults.Han QQ, Fu Y, Le JM, Ma YJ, Wei XD, Ji HL, et al.The therapeutic effects of acupuncture and electroacupuncture on cancer-related symptoms and side-effects.J Cancer. 2021;12(23):7003-7009. doi: 10.7150/jca.55803Lim R.End-of-life care in patients with advanced lung cancer.Therapeutic Advances in Respiratory Disease. 2016;10(5):455-67. doi:10.1177/1753465816660925Schur S, Weixler D, Gabl C, et al.Sedation at the end of life - a nation-wide study in palliative care units in Austria.BMC Palliat Care2016;15,50 doi:10.1186/s12904-016-0121-8United States Department of Justice, U.S. Attorneys, Central District of California.DEA-led crackdown on prescription opiod diversion targets medical professionals with criminal charges, licence revocations.Kelley AS, Morrison RS.Palliative care for the seriously ill.N Engl J Med. 2015;373(8):747–755. doi:10.1056/NEJMra1404684American Cancer Society.What Is an advance directive?
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
National Cancer Institute.Cancer pain.Fallon M, Giusti R, Aielli F, et al.Management of cancer pain in adult patients: ESMO Clinical Practice Guidelines.Ann Oncol. 2018;29(Suppl 4):iv166-iv191. doi:10.1093/annonc/mdy152National Institute on Aging.Providing care and comfort at the end of life.Boerlage AA, Ista E, Duivenvoorden HJ, De wildt SN, Tibboel D, Van dijk M.The COMFORT behaviour scale detects clinically meaningful effects of analgesic and sedative treatment.Eur J Pain. 2015;19(4):473-9. doi:10.1002/ejp.569World Health Organization.WHO’s cancer pain ladder for adults.Han QQ, Fu Y, Le JM, Ma YJ, Wei XD, Ji HL, et al.The therapeutic effects of acupuncture and electroacupuncture on cancer-related symptoms and side-effects.J Cancer. 2021;12(23):7003-7009. doi: 10.7150/jca.55803Lim R.End-of-life care in patients with advanced lung cancer.Therapeutic Advances in Respiratory Disease. 2016;10(5):455-67. doi:10.1177/1753465816660925Schur S, Weixler D, Gabl C, et al.Sedation at the end of life - a nation-wide study in palliative care units in Austria.BMC Palliat Care2016;15,50 doi:10.1186/s12904-016-0121-8United States Department of Justice, U.S. Attorneys, Central District of California.DEA-led crackdown on prescription opiod diversion targets medical professionals with criminal charges, licence revocations.Kelley AS, Morrison RS.Palliative care for the seriously ill.N Engl J Med. 2015;373(8):747–755. doi:10.1056/NEJMra1404684American Cancer Society.What Is an advance directive?
National Cancer Institute.Cancer pain.
Fallon M, Giusti R, Aielli F, et al.Management of cancer pain in adult patients: ESMO Clinical Practice Guidelines.Ann Oncol. 2018;29(Suppl 4):iv166-iv191. doi:10.1093/annonc/mdy152
National Institute on Aging.Providing care and comfort at the end of life.
Boerlage AA, Ista E, Duivenvoorden HJ, De wildt SN, Tibboel D, Van dijk M.The COMFORT behaviour scale detects clinically meaningful effects of analgesic and sedative treatment.Eur J Pain. 2015;19(4):473-9. doi:10.1002/ejp.569
World Health Organization.WHO’s cancer pain ladder for adults.
Han QQ, Fu Y, Le JM, Ma YJ, Wei XD, Ji HL, et al.The therapeutic effects of acupuncture and electroacupuncture on cancer-related symptoms and side-effects.J Cancer. 2021;12(23):7003-7009. doi: 10.7150/jca.55803
Lim R.End-of-life care in patients with advanced lung cancer.Therapeutic Advances in Respiratory Disease. 2016;10(5):455-67. doi:10.1177/1753465816660925
Schur S, Weixler D, Gabl C, et al.Sedation at the end of life - a nation-wide study in palliative care units in Austria.BMC Palliat Care2016;15,50 doi:10.1186/s12904-016-0121-8
United States Department of Justice, U.S. Attorneys, Central District of California.DEA-led crackdown on prescription opiod diversion targets medical professionals with criminal charges, licence revocations.
Kelley AS, Morrison RS.Palliative care for the seriously ill.N Engl J Med. 2015;373(8):747–755. doi:10.1056/NEJMra1404684
American Cancer Society.What Is an advance directive?
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