You may remember the Choose Your Own Adventure book series from your own childhood or from reading the books aloud to your children at home or in school. They are books generally intended for young, middle-elementary readers using the genres of mystery and adventure. Titles include Your Grandparents Are Zombies, Escape from the Haunted Warehouse, and The Lost Jewels of Nabooti. If you decide to turn right in the haunted warehouse, see page 60, or if you decide to turn left, see page 63. There are different consequences designed for different actions and the either mystery will be solved or adventure enjoyed based on your preferences.
“Choose your own adventure” is perhaps similar to the experience of managing pain – although admittedly a lot less fun. Choosing from available medications and management techniques resolves the “mystery” and “adventure” of pain and illness differently. One medication may calm pain, but raise up a variety of unwanted side-effects, while another medication may only soften the pain but leave the patient lucid and engaged. The “adventure” of pain management is perhaps most pointedly tricky for those suffering from cancer, which nearly always brings entire chapters full of difficulties from the time of diagnosis through the end of life. Pain management for terminal cancer patients is a veritable adventure of effectively managing the pain, discomfort, and disability so patients can live the fullest, most vibrant life possible until the end.
Pain management is served by the medical specialty called palliative care, which is, in effect, “care that covers your pain.” Palliative care is usually linked with hospice care, which together manage comfort and well-being for those who have limited life remaining (usually less than six months).
Chapter 1: Gauging Pain
Dame Dr. Cicely Saunders founded what we know today as the hospice and palliative care movement, and she describes pain associated with dying as “total pain,” which includes physical pain, emotional pain, interpersonal conflict, and disbelief that the end has come. Cancer patients can expect to experience this roster of symptoms and with help from a hospice and palliative care team comprised of doctors, nurses, therapists, spiritual care providers, family members, and loved ones, the complexities of total pain can be helped through regular, compassionate assessment.
The care team will seek to regularly ask patients suffering from terminal cancer, “Where does it hurt?” “How much does it hurt?” and “Why do you think it hurts?” The answers to these questions help the care team to gauge which “door to walk through” or “which turn to take” when it comes to pain management. One medication may work best for a certain set of symptoms, while a procedure may help alleviate a different problem. Sometimes medication or procedures may not help at all, and instead a confidential, caring conversation partner can provide relief from mental or spiritual anguish associated with the end of life.
Chapter 2: Medication Options
There are countless options available today that target different locations, types, and strength of pain. Physicians and members of the medical team will listen carefully to cancer patients to understand the location and nature of any pain suffered. Different options will lead patients to different outcomes, similar to “choose your own adventure.” One option may reduce pain dramatically but create a “snowed” effect where patients can no longer engage with their friends and family, so a physician may retrace steps and take a different approach which reduces pain to a manageable level such that the patient can continue to engage relationally.
A major conversation in contemporary culture also surrounds issues of opioid prescriptions, which are strong medications that can often completely relieve pain symptoms with varying experiences of both desirable and undesirable side effects. The opioid conversation and controversy tends to center on questions of addiction, so it is important to note that in the difficult “adventure” of terminal cancer, long-term addiction is not a question for consideration. Instead, comfort and quality of life are the primary questions that lead medication options for pain management.
Chapter 3: Alternative Pain Management
While pain is popularly managed via prescription medication and procedures that relieve pain without medication, it is important to note that there are other avenues to help effectively manage difficulties throughout the end stages of cancer. Hospice and palliative care teams are holistic medical practitioners, meaning that while allopathic (western) medicine is a primary source of comfort care, alternative therapies also have value in determining the best course of pain management.
For instance, trained music and art therapists can help terminal cancer patients express their feelings regarding their illness and help connect with loved ones throughout the last season of life. Opportunities to express feelings has been clinically shown to dramatically reduce patients experience of intense pain. Psychotherapists or other counselors can also help patients work through the emotional anxiety, depression, and trauma often associated with nearing death.
Engaging leaders or members of a trusted faith community can also help with the unexpected twists and turns of pain associated with terminal cancer. Oftentimes questions about life’s meaning and purpose can arise toward the end of life and people who can connect with patients spiritually, often through practices such as prayer, meditation, chant, song, or safe physical contact (hand-holding, hugs, anointing with oil, etc.), can help draw suffering patients into a space of strength and wholeness. Hospice and palliative care providers often maintain contacts with trusted spiritual care providers if patients do not already have preferred contacts of their own.
Epilogue: Choosing Your Own Adventure
The goal of hospice and palliative care is to help patients nearing the end of life to live as well as possible for as long as possible. This includes a substantial focus on pain management for as long as patients have to live, so that patients are in the best position possible to connect with the people and activities that hold the most meaning.
Pain relief at the end of life is a priority for patients and their team of loved ones and caregivers. Managing pain in the context of hospice and palliative care is an “adventure” terminal cancer patients never have to suffer alone. Please contact Harbor Light Hospice by giving us a call or sending us a message online for a free and confidential consultation about pain management.