Bettie Lewis was dying of metastatic cancer. Like many people coming to the end of life, she harbored two great fears: uncontrolled pain and abandonment. Though she was not completely comfortable, her pain was well controlled and causing her little distress. She had also developed confidence that her family and the team caring for her would remain with her to the end. She would not die alone. Yet she was deeply anxious that she would not survive long enough to see her soon-to-be-born grandson.
Fortunately she had sought care at a hospital with an outstanding palliative care program, including a team of nurses and nurse practitioners, physicians, social workers, chaplains, and volunteers who make it their mission to ensure the best possible care for patients and families facing life-ending illnesses. Though medicine had been unable to provide Lewis a cure, her healthcare team had not forgotten its core mission, which is to care.
The goal is not just to die well but to live well.
Unsurprisingly, palliative care does not generate large amounts of revenue, nor is it the sort of service that many hospitals choose to advertise. But it when it is done well, it can make a huge difference. Over one million Americans die every year, and in many parts of the country, over three-quarters die in a hospital or long-term care facility. While many say it might be better to die at home, for a majority, this simply is not what happens.
Palliative care enhances understanding, reduces suffering, and helps patients, families, and the healthcare team clarify goals. Because the focus is not on making the disease go away, it is possible to focus attention on living with it as well as possible. This bears repeating: the goal is not just to die well but to live well. Members of the team can talk openly with patients and families about what is happening and what lies ahead, helping them navigate these uncharted waters.
Without such expertise and commitment, some in healthcare can get dying very wrong. We can fail to ensure that patients and families understand the terminal nature of the situation. We can fail to relieve suffering, including pain, nausea, respiratory distress, and unrecognized depression. And we can fail to address conflicts over the goals of care - sometimes some family members push for comfort while others cling tightly to cure.
Patients, families, and health professionals all intend to do the right thing. We genuinely want to care for the gravely ill and do what we can to make their experience as comfortable and meaningful as possible. Many of us simply don't know how to do it. What should we do? What should we say? What should we avoid saying and doing? Left alone in a state of denial, many of us might cloak the whole experience in fear and embarrassment. But given the right support and guidance, we can shine.
One of the most important tasks is simply to listen. The patient will teach us what we need to know. But there are times when it helps to prime the pump with good questions. What is the worst thing about all of this? What are you afraid of? What are you hoping for? Is there anything you would like to talk about? Only if such concerns are addressed openly and honestly is there a realistic chance for genuine peace and healing.
When you talk with families who have experienced dying, one thing becomes crystal clear: they live with the experience the rest of their lives. They never forget it. So after a patient dies in uncontrolled pain, severe respiratory distress, or without truly understanding what is happening, family members continue to agonize long after the patient's suffering has ended. On the other hand, a good death can be an enduring source of comfort, bonding, and deep insight.