Nuances of hospice

Saint Philip’s Health Cabinet is comprised of health professionals who are also members of the parish. The volunteers meet monthly to design programs to promote the health, education, and well-being of Saint Philip’s parishioners.

This month’s article was written by Dr. Robert Brooks, a retired oncologist and a member of Saint Philip’s Health Cabinet.

I recently retired as a physician after a nearly four-decade career in medical oncology, a specialty focused on the use of drugs in the treatment of cancer. Over the past several years, we have seen rapid advances in cancer care with many more cancers now curable. At the same time, some cancers not curable presently can often be managed as “chronic illnesses” which result in improved longevity and quality of life. Despite this, cancer continues to claim many lives, as do heart disease, stroke, diabetes, and dementia—along with a variety of other illnesses. As the old saying goes “none of us makes it out of here alive.” 

For most of us—even people of faith—death remains a scary topic. What is really waiting for us when we round that corner, leaving behind those whom we love and the life that we know? Woody Allen was famously quoted as saying “I’m not afraid to die. I just don’t want to be there when it happens.” Death has long been a taboo subject but in recent years we have seen a definite shift in western cultures. Dialogue is beginning to loosen up around end-of-life issues.

Formalized hospice care first appeared in this country in the 1970’s. It focused on providing comfort and support for those approaching the end of life. It is now an acknowledged part of the continuum of medical care.

Hospice care seems to be a concept that most of us can get our arms around and embrace. However, despite the widespread proliferation and acceptance of hospice programs, a decision to forgo aggressive medical care to focus on comfort care alone (“switching gears” so to speak) often remains a difficult one for many patients and their families. And to be honest, many physicians can view such a transition as a failure on their part to conquer the diseases they have been trained to treat.

Often, the thinking is that there must be one more drug to try or that just another couple of more days on the ventilator will buy the time needed for recovery. Some worry that “the doctors are giving up.” The reality, however, is that our bodies don’t last forever and despite the many advances of modern medicine there will come a time for many of us when further treatment becomes futile—and sometimes harmful.   

Hospice care is aimed at addressing issues that maximize comfort, such as pain control, while also providing emotional, psychosocial and spiritual support for both patient and family. Efforts are made to enhance the environment to allow patients to remain at home for the duration of their illness. In-patient care is then typically reserved for crisis intervention, such as uncontrolled pain or caregiver fatigue, and more intensive comfort care for those who are actively dying. 

A decision to pursue hospice care requires discontinuing aggressive medical interventions, such as chemotherapy, and shifting the focus of continuing care towards comfort measures. Hospice enrollment requires that the treating physician certify that “to the best of her medical judgement,” life expectancy is less than six months.

However, patients with a life-threatening illness who survive beyond six months can be re-certified for continuing hospice care. In my own practice, I recall some patients whose debilitating side effects from treatment were so extreme that my “best educated guess” of their life-expectancy was less than six months. But when active therapy was stopped, their quality of life actually improved and they lived beyond six months.

While not hospice care, a somewhat newer medical discipline known as “palliative care” is growing in popularity. Many erroneously associate palliative care with terminal care. Modern palliative care, however, is best thought of as a focus on enhancing the quality of life (side-effect management, psychosocial support, etc.) for patients and their families throughout the totality of an illness—even when treatable or curable. At the same time, palliative care can also be elected as an interim step towards end-of-life or hospice care when an “extra layer of support” might be required. 

To a person and family, throughout my career, I cannot recall a single instance in which a decision to pursue hospice care was later met with regret. To the contrary. I do remember many times hearing patients or their loved ones lament a decision in the setting of an advanced cancer to pursue another round of chemotherapy only delaying the support the patient might have experienced with hospice care.  

Hospice workers are a unique bunch who really function as God’s angels on earth. When the day comes—as it will for most—to consider how best to maximize the time remaining as life is about to end, hospice can provide the care needed to make our final days as comfortable and meaningful as possible.