I know you’ve heard the phrase, “Too close for comfort.” In most cases, when we use it, we’re describing a near miss with some kind of danger—an automobile accident, a misstep coming down stairs or onto a curb, a potential mistake that might have been embarrassing, costly, or both. In this article, I’m flipping the meaning and considering the phrase as a missed opportunity for comforting support by delaying hospice care. Although patients with advanced life-limiting illness are eligible for hospice enrollment six months before they are likely to die from their illness, the majority enroll much closer to death, if at all. The ultimate goal of hospice care is to improve quality of life for patients and their families—to support their comfort, for as long before death as is possible.
When patients delay enrolling in hospice care, they miss the opportunity for a hospice team to do what it does best: tailor medicines to treat pain and other distressing symptoms, carefully assess equipment needs (such as oxygen concentrators, hospital beds, shower chairs, bedside commodes), provide health aids to assist with grooming and bathing, and compassionately support the emotional and spiritual needs of patients and family members. Longer alliances allow more time to assess needs thoroughly, to adjust medications, and to build trusted relationships that might serve as vital anchors of emotional and spiritual support during a flood of overwhelming sadness and paralyzing fear.
According to 2016 figures (https://www.statista.com/statistics/339865/share-of-us-hospice-patients-by-length-of-service/ ), close to 30% of patients are in hospice care for a week or less, and almost 60% are on service for a month or less. It’s a shame that eligible patients miss the opportunity for intensive symptom management and interdisciplinary team support by enrolling in the final moments of life.
Two common hurdles that delay hospice enrollment are a fundamental misconception about hospice, and dodged conversations about poor prognosis of advanced serious illness. Let’s consider each of these factors in detail.
There’s a collective misconception that transitioning to hospice care is giving up, or worse, a death sentence. Simply put, people envision being ushered hastily to their deaths with large doses of morphine and tranquilizers. The unfortunate reality is that all too often, when a patient does elect the hospice benefit, he or she is already actively dying–with only a matter of hours before death. In such situations, morphine may be the single most effective drug to manage severe pain and/or to relieve distressing shortness of breath.
Medications vital to treating the symptoms of a life-limiting illness are continued after a patient enrolls in hospice. Let’s use an example: Say the reason for hospice enrollment is advanced congestive heart failure. Patients will continue to use supplemental oxygen to alleviate shortness of breath, as well as medicines to control chest pain, fluid retention, uncomfortable swings in blood pressure, and rapid heart rate. In addition, hospice patients routinely receive medicines to manage insomnia, anxiety, depression, constipation, and general aches and pains.
Simultaneously, a social worker assesses home and community support needs, and assists families with vital paperwork such as advance directives and powers of attorney. Hospice providers can arrange a hospital bed and oxygen concentrator for home use, to allow comfortable positioning and improved breathing. A primary nurse begins a relationship with the patient and family and schedules regular home visits according to need, consulting regularly with a team physician. Equally important, a chaplain provides a listening ear and compassionate presence for patient and family who are suffering the rollercoaster of emotions and spiritual distress that accompany life-limiting illness.
Providers minimize patients’ medicine regimens only when patients no longer can swallow or become too weak to take so many drugs. At that point, the medical team reduces supportive medicines to only a few potent drugs (often concentrated liquids) that can ease the suffering of active dying. Nursing visits increase, and even continuous care is available to provide immediate treatment of distressing, uncontrolled symptoms.
Rather than “giving up,” hospice enrollment consists of shifting gears. Hospice is a change in priorities and perspective—from curing an illness, to recognizing that cure is no longer a realistic goal. When efforts to cure a disease are no longer effective, a person may be in substantial physical, emotional and spiritual distress, but months away from death. The priorities in hospice care shift to maximizing symptom control in a patient whose life will be abbreviated by illness, and to support anxious grieving family members who suffer as well.
We cling tenaciously to this life we know and to our meaningful relationships. As Margaret Atwood tenderly muses, “No matter how much you’ve been warned, Death always come knocking. Why now? is the cry. Why so soon? It’s the cry of a child being called home at dusk.” Though the multifaceted anguish cannot be extinguished, that pain can be addressed, acknowledged, and respected. Compassionate listening and presence of the hospice interdisciplinary team augment the caring presence of family and friends.
A critical communication challenge occurs when prognosis is poor and treatments are losing effectiveness in controlling a progressive illness. Health care providers have at least as much difficulty discussing bad news as the average person—perhaps even greater difficulty, because we’ve been trained to treat and cure disease, to solve problems and to persevere until we succeed in these endeavors. We have limited training in communicating bad news. For many of us, admitting that a curative treatment isn’t working and that an illness will likely end in death feels like a failure, perhaps even abandonment of a professional obligation.
The dilemma here is that a doctor’s unspoken concerns and well-intended omissions give patients and their families a false sense of optimism and deprive them of the opportunity to grapple with painful realities, to reframe hopes, and to create goals of care around realistic expectations. When death is approaching, a warning shot can be a blessing. As the Dalai Lama poses, “Analysis of death is not for the sake of becoming fearful but to appreciate this precious lifetime.”
Honest communication of medical facts, however painful, is critical. Though the precise timing of death always is uncertain, there are time-proven indicators that can guide both doctors and patients in prediction and planning. Such honesty allows patients and their families to consider the possibility of death at a time in their illness when there are still many choices to be made.
Be mindful that curing and healing are not synonymous. When a person is facing a life-limiting illness with clear eyes despite disheartening facts, the remaining time before death can be a period of great healing: healing relationships, letting go of anger, and embracing singular aspects of each day that still bring joy.
To face death squarely as the ultimate goodbye can seem an inconceivable defeat. Regardless, in time it will happen to all of us. How it happens is another matter entirely. Though there’s no “designer dying” for serious advanced illness, we can actively participate in the planning of our end-of-life care.
If hospice might mesh with your priorities and goals, consider the transition before it’s too late to benefit from the full spectrum of support and comfort that can be available for both patient and family. Choosing this multidisciplinary partnering in your care and the care of your family just might be one of the most consequential decisions you make in your life.
Stephen L Hines, MD
September 2018
