Is death painful? If you are facing a terminal illness, or have a loved one who is nearing death, it’s likely you’ve wondered about pain at the end of life. Are you likely to have pain? How is pain managed? What can be done if your pain isn’t being properly managed? These questions can raise tremendous anxiety at at a time when there are decisions to be made and you wish to be spend as much time with family and friends as possible.
Sadly, fears among the public increased after Elizabeth Taylor’s painful death hit the air waves in 2011. It’s true that historically – and even now – pain at the end of life is inadequately treated. But it doesn’t have to be that way. Pain at the end of life can almost always be controlled to the extent that people can die in comfort, whether in the hospital or at home.
How Common is Pain at the End of Life?Death is not always painful. Some people die without any pain at all. But others have a lot of pain. Up to 35% of patients describe their pain in the last week of life as severe or intolerable. Again, this does not need to happen, and it breaks my heart to write those words. (Below I’ll share some tips on making sure your pain is treated adequately.)
The amount of pain you experience can vary depending upon your diagnosis. With cancer, up to 90% of people experience pain at some point in their journey, and half of people dying from cancer have severe pain. Sadly only half of these people receive reliable pain control.
Why is Pain Undertreated?First of all, it’s important to say over and over again that pain can and should be treated well at the end of life. According to the World Health Organization, patients have a right to have their pain treated. So why do some people still die in pain? Some of the reasons include:
- Fear of addiction – People who are dying, family members, and health care professionals alike often carry a concern about addiction. But this should not be a concern at the end of life.
- Lack of communication – Physicians need to realize you are having pain in order to recommend treatment.
- Fear of tolerance – Some people are afraid that if they use medications now, they will fail to work later "when they really need them." This isn't true and if tolerance develops, a stronger medication or a different medication may be used.
- Lack of training – Some physicians have had inadequate training on how to manage pain at the end of life.
- Desire to be a "good" patient – Some people hesitate to ask for pain medications for fear that they will be a "bad" patient and fear bothering their doctor. Remember, physicians are being paid to manage pain.
- Fear that medications will hasten death – Studies have found that treating end of life pain with narcotics and even palliative sedation does not shorten life.
- Denial – Some people are afraid to admit that their pain is worsening because it often signifies that their condition is worsening.
- Side effects of pain medications – All medications have side effects, and symptoms such as constipation, drowsiness, and nausea can make using pain medications undesirable. Drowsiness, especially may deter people from using enough medication as they wish to spend as much time as possible alert with their loved ones.
- Cost – Pain medications add yet another cost when finances are often tight due to illness.
- Physician’s fears – Physicians may be reluctant to prescribe strong painkillers due to fear of reprimand by medical boards.
Impact of End of Life PainIn addition to discomfort, uncontrolled pain can have many other negative effects. Physically, pain can accentuate other symptoms such as shortness of breath and anxiety. Emotionally it can leave you short tempered and unable to concentrate; in turn making it difficult to have meaningful conversations with your loved ones. Spiritually it can leave you feeling alone and empty. Altogether pain can interfere with making sure your legal affairs are in order, with making amends, and ultimately, with saying goodbye.
For those who are dying, pain can rob them of their last moments here on earth. For those left behind, the memory of the dying process will linger for years to come. If that time was marked by pain, it can result in prolonged grieving.
How is Pain Managed?The World Health Organization has put together a pain treatment stepladder. Following these 3 steps alone can control pain in roughly 80-90% of people. For those who need further pain relief, a 4th step can be used which includes treatments such as nerve blocks, radiation treatments, and more. In addition, alternative treatments such as acupuncture and massage may be used along with conventional treatments. Not to be forgotten are the emotional, social, and spiritual needs that, when addressed, can play a huge part in helping to control pain.
The following articles discuss the pain cycle, how to assess pain, as well as some common medications and procedures that are used at the end of life:
Describing PainIn order to properly treat your pain, your doctor has to have some understanding about the type and intensity of pain you are experiencing. In addition to asking you to describe your pain, she will also want to know how it is affecting you. For example, does it interfere with eating, with sleeping, or with talking with your loved ones?
Doctors often use something called a pain scale, to make a subjective sensation a little more objective, as well as to monitor the results of treatment. You may be asked to describe your pain on a scale of 1 to 10, with 1 being very minimal pain, and 10 being the worst pain you can imagine.
What Can You Do to Make Sure Pain is Adequately Controlled?The most important thing you can do to make sure your pain is controlled, is to talk openly and honestly with your doctor about what you are experiencing. Doctors aren’t mind readers, and pain is experienced differently for everyone. One person with stage 4 cancer may have severe pain, while another won’t experience any pain at all.
Using medications regularly and around the clock is important as well. Catch-up pain is much harder to deal with than pain that is kept in check. The goal should be to prevent severe pain, rather than holding off on medications until you just can’t stand it. If it is a loved one who is dying, don’t forget the power of touch. Fear can dramatically worsen the experience of pain, and the greatest fear of those who are dying is of being abandoned.
Final WordsNobody should die with uncontrolled pain. It is your legal and ethical right to receive treatment that allows you to comfortably spend your last moments on earth with your loved ones. None of us wants to die. There will always be sorrow and grief. But each one of us should be able to say, in that next place: "I had a good death."
Hicks, F., and E. Rees. A ‘pain-free’ death. British Medical Bulletin. 2008. 88(1):23-41.
Jackson, V., and L. Nabati. Up-to-Date. End of Life Care: Ethical considerations in effective pain management. Updated 08/13/12. http://www.uptodate.com/contents/end-of-life-care-ethical-considerations-in-effective-pain-management
The Merck Manual. Symptom Control in the Dying. Updated Feb 2012. http://www.merckmanuals.com/professional/special_subjects/the_dying_patient/symptom_control_in_the_dying.html
National Institute on Aging. End of Life: Helping With Comfort and Care. Updated 05/19/04. http://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/providing-comfort-end-life
Whitecar, P., Jonas, A., and M. Clasen. Managing Pain in the Dying Patient. American Family Physician. 2000. 61(3):755-764.
World Health Organization. WHO’s Step ladder. Accessed 02/26/13. http://www.who.int/cancer/palliative/painladder/en/