If you are facing a terminal illness or have a loved one who is nearing death, the question as to whether or not death is painful has likely entered your mind. This may be particularly so if the illness has already caused pain and you are hoping for just a moment of reprieve before the end of life.
The answer is, yes, death can be painful. But it is not always—and there are ways to help manage it to ease one’s final days.
Variations of Pain Near Death
Some may have a significant amount of pain in their final hours, while others have none at all. The amount of pain you experience can vary depending on your diagnosis—but even then, personal differences occur.
With cancer, up to 90% of people experience pain at some point in their journey, and half of the people dying from cancer have severe pain.1 In a Dutch study of people dying from cancer, more than one of every four subjects described their pain and suffering as “intolerable.”2 Sadly, only half of these people receive reliable pain control. Learn More About Cancer Pain
Impact of Pain at the End of Life
In addition to discomfort, uncontrolled pain can accentuate other symptoms such as shortness of breath and anxiety. Emotionally, it can leave someone short-tempered and unable to concentrate, making it difficult to have meaningful conversations with loved ones.3 Spiritually, it can lead to feelings of loneliness and emptiness.
More practically, pain can interfere with things like making sure your legal affairs are in order, with making amends, and ultimately, with saying goodbye. For those left behind, the memory of the dying process often lingers for years to come. And it that time was marked by pain, it can result in prolonged grieving.
In order to properly treat pain, doctors have to have some understanding of the type and intensity of pain being experienced. In addition to asking you (or your loved one) to describe the pain, they will also want to know what effects it’s having. For example, does it interfere with eating, sleeping, or talking?
Doctors often use a pain scale to make the reporting of this subjective sensation a little more objective, as well as to monitor the results of treatment. Patients are asked to describe their pain on a scale of 1 to 10, with 1 being almost no pain and 10 being the worst pain imaginable. https://0f432e34ae0c99eb45c98ea26db88bb5.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html
But patients should not feel that they have to wait to be asked about their pain to report it. Talking openly and honestly with healthcare team members about the nature, frequency, and severity pain is, perhaps, the most important thing one can do to make sure it is controlled. https://0f432e34ae0c99eb45c98ea26db88bb5.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html Using a Pain Scale
Management of End-of-Life Pain
While not all healthcare providers as skilled in pain management as those who specialize in that discipline, there are guidelines that can be used.
The World Health Organization (WHO) has put together a pain treatment stepladder.4 According to the organization, following the first three steps alone can control pain in roughly 80% to 90% of people:4
- Non-opioid medications such as aspirin or Tylenol (acetaminophen) should be tried first. This may be with or without adjuvants, which are medications that reduce fear or anxiety.
- If the pain persists or increases, an opioid appropriate for mild to moderate pain (e.g., codeine) may be added. Non-opioids and adjuvants may also be used.
- If pain persists or increases, an opioid appropriate for moderate to severe pain (e.g., morphine) may be used. Again, non-opioids and adjuvants may be used as well.
- For those who need further pain relief, treatments such as nerve blocks, radiation treatments, and others can be used.
It’s recommended that drugs be given on a schedule (regularly and around-the-clock), rather than only when pain is experienced. Catch-up pain is much harder to deal with than pain that’s kept in check.
The goal should be to prevent severe pain, rather than holding off on taking medication until the pain is simply no longer tolerable.
Reasons for Undertreatment
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.4 Still, many don’t—and for a variety of reasons.6
Some relate to concerns about the risks of pain management drugs. For example:
- Side effects: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.
- Tolerance:Some people are afraid that if they use medications now, the medications will fail to work later “when they really need them.” If medication tolerance develops, a stronger medication or a different medication may be used.
- Addiction: People who are dying, family members, and healthcare professionals alike often carry a concern about addiction. But this should not be a concern at the end of life.
- Hastening death:Studies have found that treating the end of life pain with narcotics and even palliative sedation does not shorten life.7
Other reasons for under-treatment relate to acceptance, appearances, or even practical matters. For example:
- Denial:Some people are afraid to admit that their pain is worsening because it often signifies that their condition is worsening.
- Desire to be a “good” patient:Some people hesitate to ask for pain medications for fear that they will be labeled a “bad” patient or bother their doctors. Remember, part of a physician’s job is to help manage pain.
- Cost:Pain medications add yet another cost when finances are often tight due to illness.
Still other reasons for under-treatment of pain relate to physicians, rather than patients:
- Awareness:Physicians are usually only present with a person for a short period of time—not long enough to truly appreciate the degree of pain a person may be experiencing. Patients should never assume that their doctor not giving them pain medication means they don’t need it.
- Lack of training:Some physicians have had inadequate training on how to manage pain at the end of life.
- Fear:Physicians may be reluctant to prescribe strong painkillers due to fear of reprimand by medical boards.
Palliative and Hospice Care
If your healthcare team is not successful in managing your pain, you may want to ask for a referral for palliative care.
A palliative care team is composed of healthcare professionals skilled in pain management and comfort care, not only at the end of life but also for those with chronic pain. They include palliative care physicians, nurse practitioners, nurses, and therapists. A team will often also include social workers and chaplains.
Palliative care teams aim to improve quality of life and decrease suffering for those at any stage of their illness. In the U.S., hospice teams provide these services for those in the last six months of life, at the time of discontinuing curative treatments.
It can be beneficial to find a palliative care team earlier in your course of illness rather than waiting until your prognosis qualifies you for hospice care.
According to a 2015 study in the New England Journal of Medicine, those who have outpatient palliative care have better symptom management, are less likely to be hospitalized, and have longer survival than those who do not.8
You can have access to a palliative care team in a variety of settings. Besides the hospital, you can receive palliative care in a nursing home, hospice, clinic, or in your own home.
The Affordable Care Act (ACA) provided incentives for the development of palliative care teams, so they have become more accessible. Palliative care is covered under Medicare Part B for inpatient and outpatient care.
Hospice care can also be provided in your home or at a residential hospice facility or nursing home. Hospice (and related medications) is covered under the Medicare hospice benefit, as well as by the Veterans Administration and Medicaid.
To find a palliative care team or hospice, begin by asking your (or your loved one’s) doctor, case manager nurse, or social worker.
You can search online for options using the palliative care provider directory maintained by the Center to Advance Palliative Care, or find a hospice care provider with the directory maintained by the National Hospice and Palliative Care Organization. Describing Your Loved One’s Pain and Keeping a Log
Not to be forgotten are the emotional, social, and spiritual needs that, when addressed, can play a huge part in helping to cope with pain. 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 often the greatest fear of those who are dying is being alone. Be present with the person, hold their hand, and assist appropriately in care. Communicate via phone or other forms of virtual communication if you cannot be with them.
Music and pet therapy can also help distract from pain. If the person is able, outings to favorite places, or enjoying favorite foods are also ways to help put pain in the background.
A social worker can assist in making arrangements that may be a source of anxiety, possibly worsening the experience of pain. These can include making advance directives; funeral planning; locating community resources; helping with paperwork for insurance, Medicare, and Medicaid; and facilitating family communication.
A palliative care team or hospice team will include a chaplain who can provide support for spiritual needs, if desired. If not enlisted for these services, family members may reach out to a clergy member or counselor who is sensitive to the spiritual traditions of the person who is at the end of life.
Source: Verywell Health