When you get a terminal cancer diagnosis, that’s just the beginning of the bad news. You’ll also learn how your disease will likely progress, about the harsh treatments ahead, and how you’ll suffer increasingly on the way to death. If you’re still working and value your job, you must give that up. The family you take care of? Now they will care for you, and you fear you’ll be a burden. You’ll have to endure all this alone if there's no family.
Is there anything to hope for?
The answer is obvious for many: they hope things will turn out differently for them. I have told the story of my old professor Stephen Jay Gould, who was given a prognosis of 8 months but lived 20 immensely productive years. You can hope for this; I certainly hope to outlive my prognosis.
But I caution you not to make survival the exclusive focus of your hopes. Your doctor’s judgment might be wrong, but it’s more likely correct. Many patients receive ineffective but excruciating treatments because they want a miracle. You also need something to live for in your remaining time, however brief it may be.
The surgeon Atul Gawande describes caring for a patient at the end of her life who wanted to attend her niece’s wedding. Gawande and his patient settled on this as their treatment goal, and it lifted her up. She attended joyfully, then died a few days later. That’s wonderful, but what if you don’t have a niece? That story might feel like a slap in your face. We need hope that is available to everyone.
Here it is: you can serve. In any situation, there is something you can do. We are cancer patients; people are caring for us, so we have opportunities to care for our caregivers.
How you care depends on whether the caregiver is a family member or a healthcare professional. With a family member, it’s appropriate to attend to their emotional needs, including the stress caused by your illness. Your family and friends will apologize for discussing their problems because “My problems are nothing compared to yours.” I tell them that their problems matter and that letting me help them helps me.
But if a caregiver is a professional, they shouldn’t look to you to meet their needs. Instead, be constructive, which doesn’t mean faking a smile. Instead, do your best to follow the treatment plan and tell the clinician the truth if it doesn’t work for you. I tend to minimize my problems when I present myself to others, but that’s counterproductive. Clinicians need patients to tell them what they’re experiencing; your self-report is often more valuable than ‘objective’ test results or scans. Make an effort to report accurate and detailed information about your symptoms.
When you interact with anyone giving you care, focus your attention on them. Turn off the television, pocket your phone, and disconnect your Bluetooth headset. Commit to deep listening. Look your caregiver in the eyes. Don’t interrupt them; ask thoughtful questions when they have finished. If you worry that you misunderstood, tell the caregiver what you heard them say so they can clarify. Spare them your opinions.
Careful listening will help people take better care of you, but there’s more to it. Deep attention communicates that we value someone for their sake, not for any benefit we might derive from them. Valuing another for their sake is selfless love. People will immediately reciprocate with attention and good care. But you’ll benefit from expressing selfless love even if they don’t.
Be grateful to everyone who cares for you. There is a technique for gratitude. The effect of your thanks is most potent when you can identify a specific action by your caregiver that helped (and you’ll see that particular act because you’re attending, right?). Specific thanks tells your caregiver that your gratitude was sincere. And ‘express gratitude to everyone’ means you should thank the receptionists, volunteers, and housekeepers the same way you would a doctor or nurse. The housekeepers gave you time and labour. The market says that the doctor’s time is ten times more precious than the housekeeper’s, but everyone’s time is equally valuable to God. So look at them through God’s eyes; that’s what respecting human dignity means. Everyone who does their job well deserves the same respect and gratitude.
But what if you are getting bad care? Sometimes you encounter insensitive caregivers who deliver grim facts without seeking to discern what you are ready to hear. Or someone who lectures you for not taking medication, being late for your appointment, failing to change your diet, or whatever. Worse, you may have been hospitalized at a substandard facility where the staff responds slowly to urgent needs for water, food, warmth, or toileting.
No one should tolerate negligent or abusive care. Try to find a friend or family member who works in healthcare who understands the system and can be your advocate.
However, the cause of bad care is usually the healthcare system, not the individual nurses, doctors, technicians, or staff you interact with. Perhaps you have been placed in a facility that does not offer necessary treatments; you were likely sent there because that’s all your insurer will pay for. If you’re in an understaffed hospital, the staff is overworked. The doctor who seemed inattentive when she saw you? She may have been on call that night, awakened several times for urgent consultations about a patient. Perhaps she just had to tell a family that the chances of their loved one surviving more than a few days are slim and that the surgery they want would most likely reduce even those prospects. Count on it: following that experience, a kind word from you would mean the world to this doctor.
What can you hope for when your hope seems gone? You can do good by caring for those who care for you. Your mission is to fulfill God’s will by loving your neighbour. Don’t stumble over the word ‘God,’; this sentence translates into every human tradition. Your lovingkindness–a Buddhist virtue–will improve your caregiver’s life. Because people reciprocate love, you will benefit from more attentive and compassionate care. When you raise your caregiver’s morale, that persists in her interaction with the next patient. The consequences of your good acts will spread throughout the world.
Bill, I have been amiss in not letting you know how profoundly meaningful your writing has been and continues to be. I appreciate your courage and, even more, your generosity, in sharing what you do. Even in your writing you are taking care of us readers by giving such a meaningful gift. At this time when the need for love, respect, and common goodness is so achingly needed in all directions, it makes a difference. We almost never get to know what the ripple effect of our words and actions is, what happens with what we drop into an apparent black hole, but those words and actions really matter.
"The market says that the doctor’s time is ten times more precious than the housekeeper’s, but everyone’s time is equally valuable to God. So look at them through God’s eyes; that’s what respecting human dignity means. Everyone who does their job well deserves the same respect and gratitude."
Thank you for all of your writing.