Jane is suffering from cancer. It started in her liver and has now spread to her lungs and embedded in her bones. The chemo and radiation are not helping. But her doctor has yet to bring up hospice – the “H word” so many don’t want to hear.
“Americans are a death-denying culture,” explains Dr. Michael Paletta, chief medical officer at Arbor Hospice and hospice physician for 20 years. “Sometimes we don’t want to accept our own mortality. Often, patients wait until a doctor mentions end-of-life before they’ll even begin to wrap their minds around it. But if patients don’t ask, doctors may continue to search out treatment options, even if a cure is unlikely.”
Paletta explains that doctors don’t always offer hospice as an option because they don’t want to deny patients a ray of hope.
“Doctors take the decline and death of patients very personally,” Paletta said. “They don’t want to be responsible for denying a patient the opportunity to recover, and they want to know they’ve done everything possible to cure their patients of illness.
“In modern medicine, it’s unusual for a doctor to feel there is nothing else to offer. There is always one more experimental drug or treatment to try – the question is what benefit will the treatment offer the patient and at what cost.”
While a doctor may not want to deny hope, Paletta says it can be just as harmful to foster a patient’s unrealistic vision of recovery.
“Hope comes in many shapes and forms,” Paletta said. “Instead of hoping for a cure that doesn’t exist, patients can hope to manage their pain and symptoms and improve their quality of life. This isn’t giving up hope; this is hoping for something that can actually happen and devoting energy to something that has proven to be valuable.
“Continue to pray for a miracle, but put things in place that will help you and your family. Perhaps the miracle provided is a controlled, dignified and peaceful ending of a celebrated life.”
But when is the right time to consider hospice for you or your loved one?
“If treatments are not going well, and if the treatment path the doctor initially laid out doesn’t seem to be working, it might be the right time to ask your doctor what’s next and when you should consider hospice,” Paletta explained. “If your doctor says it’s too soon to discuss hospice, try to get a better understanding of what the road ahead looks like in terms of treatment options. Ask when it will be appropriate to consider hospice and request specifics. This will help you gain a better understanding of the path you’re on and if you and your doctor have the same goals.
“If you aren’t satisfied with the plan your doctor has in place, seek a second option. I’m always surprised to hear that people don’t consult with another doctor. They seem to think this will offend the physician, but it’s usually welcomed. Good doctors realize that most of the time their recommendations are reinforced and a second option can actually enhance the faith and trust their patients have in them.”
Paletta notes that considering hospice isn’t a decision, it’s understanding your options.
“Hospice is a choice that patients and families can make, but no one should ever be forced to make that decision,” Paletta said. “If you decide you’re not ready for hospice and you want to continue to seek out treatments, you can wait. And then it’s an informed waiting that has a specific end point rather than delaying or avoiding the decision.”
Paletta suggests that those suffering from a severe or terminal illness should contact hospice sooner rather than later, even if they aren’t necessarily ready to begin hospice care.
“It’s always better for patients to reach out to a hospice organization early, rather than in a time of crisis. This gives them the time and ability to gather information about the services offered, choose the hospice organization that suits them best and make an informed decision. Hospice can even help wit things like advance directives and selecting a patient advocate.
“And perhaps most importantly, by looking into hospice options early in your illness, you’ve put yourself in a position where you can make the decision that’s right for you and take that pressure off your family.”