If you are facing an incurable illness or have a loved one who is nearing death , the question of whether death is painful has likely crossed your mind. This can be especially important if the illness has already caused you pain and you are waiting for respite for the rest of your life.
The answer is yes, death can be painful. But that's not always the case, and there are ways to help deal with that to ease your final days.
Variations in pain before death
Some may have severe pain in the last few hours, while others may not have it at all. The degree of pain you experience may vary depending on your diagnosis, but personal differences still arise.
In the case of cancer , up to 90% of people experience pain at some point during their journey, and half of the people who die from cancer experience severe pain. In a Dutch study of people dying from cancer, more than one in four subjects described their pain and suffering as "excruciating." Unfortunately , only half of these people get reliable pain control.
Impact of pain at the end of life
In addition to discomfort, uncontrolled pain can worsen other symptoms such as shortness of breath and anxiety. Emotionally, this can make a person short-tempered and unable to focus, making it difficult to have meaningful conversations with loved ones. Spiritually , this can lead to feelings of loneliness and emptiness.
In practice, pain can get in the way, for example, making sure your legal affairs are in order, making amends, and ultimately saying goodbye. For those left behind, the memory of the dying process often lasts for years. And if this time was marked by pain, it can end in a long-term duel .
To properly treat pain, physicians must understand the type and intensity of pain experienced. In addition to asking you (or your loved one) to describe the pain, they will also want to know what effects it has. For example, does it interfere with eating, sleeping, or talking?
Doctors often use a pain scale to make the reporting of this subjective feeling a little more objective and to track the results of treatment. Patients are asked to describe their pain on a scale of 1 to 10, where 1 is almost painless and 10 is the worst pain imaginable.
But patients should not think that they need to wait to be asked about their pain to report it. Talking openly and honestly with your healthcare team about the nature, frequency, and severity of pain is perhaps the most important thing you can do to manage it.
Pain management at the end of life
While not all healthcare professionals are as skilled at pain management as those who specialize in this area, there are guidelines that can be followed.
The World Health Organization (WHO) has developed a ladder for pain management. According to the organization, just completing the first three steps can control pain in approximately 80-90% of people :
- Non-opioid medications such as aspirin or Tylenol (acetaminophen) should be tried first. It can be with or without adjuvants that reduce fear or anxiety.
- If pain persists or worsens, a suitable opioid may be added to relieve mild to moderate pain (such as codeine). Neopioids and adjuvants can also be used.
- If pain persists or worsens, an opioid suitable for moderate to severe pain (such as morphine) may be used. Again, non-opioids and adjuvants can also be used.
- For those who need more pain relief, treatments such as nerve blocks, radiation therapy, and others can be used.
It is recommended to prescribe medications on a schedule (regularly and throughout the day), and not just when pain occurs. It is much more difficult to deal with pain than the pain that is being repressed.
The goal should be to prevent severe pain, not to delay medication until the pain becomes unbearable.
Reasons for insufficient treatment
Pain can and should be treated well at the end of life. According to the World Health Organization, patients are eligible for pain management , but many do not, and for various reasons .
Some of these are related to concerns about taking pain relievers. For instance:
- Side Effects : All medications have side effects, and symptoms such as constipation, drowsiness, and nausea can make the use of pain relievers undesirable. Drowsiness can prevent people from taking enough medicine because they want to spend as much time as possible with their loved ones.
- Tolerance : Some people fear that if they start taking the drug now, it won't work later, "when you really need it." If tolerance to a drug develops, a stronger drug or another drug may be used.
- Addiction : People who are dying, family members, and healthcare providers are just as likely to worry about addiction. But this should not be a concern at the end of life.
- Hastening death : Studies have shown that treating pain at the end of life with medications and even palliative sedation does not shorten life .
Other reasons for under-treatment are related to acceptance, appearance, or even practicality. For instance:
- Disclaimer : Some people are afraid to admit that their pain is getting worse because this often means that their condition is getting worse.
- Desire to be a "good" patient : Some people are hesitant to ask for pain relievers, fearing that doctors will consider them "bad" patients or will bother them. Remember that part of a doctor's job is to help control pain.
- Cost : Pain relievers add another price when finances are often limited due to illness.
Other causes of poor pain management are related to doctors, not patients:
- Consciousness : Doctors are usually only present with a person for a short period of time, not long enough to really appreciate the degree of pain they may be experiencing. Patients should never assume that their doctor is not giving them pain relievers, which means that they do not need them.
- Lack of training : Some doctors have not received adequate training on how to treat pain at the end of life.
- Fear : Doctors may be reluctant to prescribe strong pain relievers for fear of reprimand from medical boards.
Hospice and palliative care
If your health care team cannot control your pain, you can request a referral for hospice care.
The palliative care team is made up of healthcare professionals with skills in pain management and comfort not only at the end of life, but also for those with chronic pain. These include hospice physicians, nurse practitioners, nurses , and therapists. The team often also includes social workers and chaplains.
Palliative care teams strive to improve the quality of life and reduce suffering for people at any stage of illness. In the United States, hospice teams provide these services to those who interrupt treatment in the last six months of life.
It can be helpful to find a hospice team before your illness to wait for your prognosis to qualify you for hospice treatment.
According to a 2015 study published in the New England Journal of Medicine , those who receive outpatient palliative care cope better with symptoms, are less likely to be hospitalized, and have higher survival rates than those who do not .
You can access the hospice team in a variety of settings. In addition to the hospital, you can receive hospice care in a nursing home, hospice, clinic, or home.
Hospice care can also be given to you in your home, hospice facility, or nursing home. Hospice (and related drugs) are covered under the hospice benefits of Medicare and the Department of Veterans Affairs and Medicaid.
To find a hospice or hospice team, first ask your doctor, lead nurse, or social worker (or your loved one).
You can search online using the Palliative Care Provider Directory maintained by the Palliative Care Center of Excellence, or find a hospice provider using the National Palliative Care and Palliative Care Directory.
Consider emotional, social, and spiritual needs that, if met, can play an important role in helping you cope with pain. If a loved one dies, don't forget the power of touch.
Fear can dramatically exacerbate the experience of pain, and often the greatest fear of the dying is loneliness. Be present with the person, hold their hand, and assist in their care accordingly. Reach out by phone or other forms of virtual communication if you cannot be with them.
Music and zootherapy can also help distract from pain. If a person can, walking to their favorite places or enjoying their favorite food can also help relieve pain.
A social worker can help you take steps that can be a source of anxiety and possibly exacerbate the experience of pain. These may include advance directives ; funeral planning ; search for community resources; assistance with paperwork for insurance, Medicare and Medicaid; and facilitate family communication.
The hospice team or hospice team will include a chaplain who can provide spiritual support if desired. If family members are not enrolled in these services, they can go to a clergy member or counselor who is sensitive to the person's end-of-life spiritual traditions.
Frequently asked questions
Unfortunately, most people diagnosed with cancer experience pain at some point, and about half of the people who die from cancer experience severe pain. There are different types of cancer pain, but your doctor may prescribe medicine to help control it.
An advance directive is a legal document created to inform other people of the medical decisions you would like to make if you are unable to express your wishes yourself.