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.
Talking about dying can be tricky. Some patients and families may initially interpret its mention as an indication that the care team has given up. This can be especially problematic when those involved belong to social and economic groups that have traditionally felt neglected or abandoned by the healthcare system. Their first instinct may be to think that the hospital is simply trying to reduce its costs by cutting back on therapy.
In some cases, the trust of patients and families is there from the start and never wavers. In other cases, trust must be earned. In both circumstances, however, the health professional's resources include curiosity and a sincere desire to learn. What are patients and families experiencing, what have they found meaningful, and what is working well and what isn't? Each time we learn such lessons, they can help us do a better job of caring for others.