Talking about terminal illness, death, and death with our siblings can help avoid, and even prevent, depression and family conflict, but with the unexpected and terminal happening many times each day, terminal patients (or what we in medical jargon often call terminal or end-of-life patients) must also find ways to bring relief into their lives, and their families, even if they can’t always predict what exact task will relieve the pain or fear, or even if they will find the relief.
The prospect of going to a terminal situation can be overwhelming and incredibly stressful to those who are already feeling low. Increasingly, terminally ill patients and their families are looking to their own support system (including their extended families, friends, personal support workers, and even religious community) to help them cope with a stressful moment such as cancer diagnosis, but in truth all of these outside sources, regardless of how much they may be experienced, need to be sought assistance from the medical system and services, as well. These services can range from some simple medications to patient assistance with attending support group meetings and the use of palliative care therapies. But for patients and families who have gone from lacking life support systems and life-sustaining machines to being robbed of life support and life sustaining machines completely, finding a procedure or procedure that will relieve the discomfort and pain is often easier said than done, and as is often the case when faced with the full force of advanced illness, time is of the essence.
Gone is the time when it was possible to simply go to the doctor and ask questions of a doctor about death and dying. In the United States, nearly two-thirds of hospice facilities nationwide have difficulty finding staffing and resources to care for a limited number of patients. And although hospice, in most forms, can actually reduce pain and assist in hospice caregivers, these caregivers must be directed to physical and mental pain relief therapies and to visiting specialists.
Terminal and end-of-life patients and their families often have a number of networks of support, doctors, specialists, hospice, support groups, and other services in which to direct. But many find themselves having to “check into” these resources as they might have done in the past when the terminal diagnosis did not pop up on their horizon with startling certainty or at all.
This can cause mental suffering for those in the waiting game to find relief for symptoms, however small or long it may have been. For those dying to some degree, learning about treatments and prognoses can be very difficult as well, even if the patient is making a sincere request to their family and the doctor, or at least to their loved ones, that there be some level of communication about the quality of their life. Those seeking respite and support often call on a support group, a doctor, a spiritual or religious advisor, and oftentimes even a palliative care volunteer or medical expert (who either happens to be an ally or a personal adviser). But if all other resources are limited to what is called a LQT, meaning the knowledge about the active progression of the disease and full risk of death, a cancer patient with multiple medical specialists who understand all the same symptoms and struggles of their disease may find themselves unable to receive any sort of support. And such are the situations in which outside resources might become vital to meet a terminal patient’s unique, and sometimes mysterious, needs. It’s important to remember that where patients are seeking relief for their symptoms often has as much to do with their capacity to receive such relief as it does with the extent of the symptoms and their worst fears of the eventual death of a loved one. Where a patient receives treatment might matter, but if the organization or care service’s resources are limited, all that the patient can hope for is to find help to ease symptoms and to relieve the suffering.
For terminal patients and their families, like for many patients and families dealing with a terminal illness, it’s not always easy to meet the needs of one of the most important “tasks” in every patient’s life — life itself. But with any hope that treatments can be curative, or at least prolong patients’ remaining time of life, comes a demand that the patient and his or her care giver attend to all levels of pain and discomfort that comes with the arduous and scary end of life journey. This realization that only the end of days, or even hours, truly count is a constant reminder to those who find themselves dying and our medical and home health system why we need the resources and support that our health care system provides.