From the very beginning of life we’re pain-averse. Little ones dread annual injections and no one likes scraping knees and elbows while learning to walk. Even from an early age we seek out ways to manage pain. Dad’s kiss boo-boo’s and Mom’s “fix it” with a Band-Aid. Shots at the doctor’s office are negotiated with promises of hugs and ice cream afterwards.
Ouch: Assessing Your Pain
Usually by the last third of life, once there is more life lived than life to come, we have accepted that life comes with a certain measure of pain. A paper cut or stubbed toe might cause us to gasp, “ouch!” but doesn’t send us crying to our parents. In fact, parents are often gone by the time our own end draws near. By the time end of life becomes an important topic for discussion, the old question of “will it hurt?” comes back to visit, and we need to make grown-up plans with our loved ones about how to manage. Band-Aids and ice cream won’t fix the pain endured at the end of life, but there are good, caring options available.
Pain management is often considered the domain of a medical specialty called Palliative Care. The word palliative comes from the Latin word for “cloaking,” which is another way of saying, “care that covers your pain.” Palliative care, which is often provided in a hospice setting, might be considered a much bigger Band-Aid for a much more complex experience of pain.
Assessing Your Pain
One of the founders of modern hospice and palliative care, Dr. Cicely Saunders, describes the pain associated with the dying process as “total pain,” which includes physical pain, emotional pain, interpersonal conflict, and disbelief that the end has come. Physicians, nurses, and other caregivers will help tend to the multiple challenges of pain through constant assessment. Just like Mom and Dad used to ask, your care team will frequently ask, “Where does it hurt?” and “how much does it hurt?” and questions similar to these in order to help them understand your pain and determine the best course of treatment. Your caregivers will seek to assess and manage pre-existing, chronic pain, new pain that emerges, and even your psychological distress. For more useful resources on pain management, review:
Use of Medicine
Among the greatest concerns patients and their families often face at the end of life is how to make decisions regarding prescription and non-prescription drugs. Your care team can provide Tylenol or other over-the-counter drugs, but chances are, they will offer much stronger medications to manage your much more complex pain symptoms. You may hear about and receive opioids, including the commonly prescribed morphine for pain management. The care team will responsibly offer you appropriate dosage and will also modify your dose as needed and help you to manage side effects of the medication. For more on prescription and non-prescription drug use, please read:
A quality hospice and palliative care team or center is likely to have non-pharmaceutical treatments available to help you or your loved one face the challenges of pain management at the end of life. For example, art and music therapy are frequently an option. Scientific and alternative studies alike have demonstrated that trained music therapists can help redirect and calm the effects of pain providing astonishing relief to those who suffer.
Renowned thanatologist (a person who studies death, dying, and associated practices) Therese Schroeder-Sheker uses both vocal and harp music to soothe patients. Schroeder-Sheker writes, “[the patient] may have excellent pain medication for tumors or degenerative conditions, but may be struggling with emotional, mental or spiritual anguish.” She brings music to sufferers bedside which slows pounding hearts, calms breathing, and allows those who have struggled against end of life pain symptoms to enter calm, restorative sleep.
Additionally, both leaders and members of your faith community are also usually able to visit as a vital part of end-of-life care. Prayer, meditation, hand-holding, chanting, and other faith-related rituals often draw those at the end-of-life into the familiar space of community and religious practices that have given comfort in life up until the end. If you do not have a faith community, ask your hospice and palliative care providers for referrals.
Life Goals: The Ultimate Challenge
Your hospice and palliative care team, along with your loved ones, see your pain management goals as a means to living your best, most vibrant life up until the very end. Whether it’s medication or alternative therapies, the most significant challenge your caregivers will face is helping you to identify the most important aspects of your last months, weeks, or days. Perhaps you are willing to manage some pain with less powerful drug doses for the sake of being awake and alert when your grandchildren visit. It may be that you want treatments to support you in getting good rest for the week leading up to a wedding you were anxious to attend. You may want treatment to focus on your anxiety and depression surrounding the end of life.
Whatever your goals are, communicate them clearly or talk through your thoughts with your care team so that your pain can be managed toward the best possible outcomes that bring you and your loved ones deep satisfaction in all your moments together.
Contact Harbr Light Hospice Today
Pain relief at the end of life is a priority and challenge for you and your entire healthcare team, professionals and loved ones alike. There are resources for you to explore the best pain management options available. Please contact Harbor Light Hospice for more information on how hospice or palliative care can benefit you or a loved one.