Patients have a unique relationship with their primary provider. Many times they have been seeing this healthcare professional for years, entrusting them to manage their health and well-being as partners in important decisions about treatment and medical management. So, many expect that if their health has declined to the point that hospice care is the realistic and reasonable treatment choice, their PCP will introduce the idea AND tell them which provider they should use to provide their care. Unfortunately, this is flawed thinking and a plan that has the potential to produce poor outcomes. Here are the reasons why:
1. Allowing anyone else to make your end of life decisions or build your end of life plan is likely to result in not exactly having your wishes identified or needs met. It is something like having someone else plan your marriage, vacation or birth of your child. They don’t know what you want, what you need, what you hope to accomplish, what your resources or priorities are or what you want to leave behind. And, they often have their own agenda that has nothing to do with the your care.
I recently met with a family whose PCP refused to write the order for an evaluation to determine whether the patient qualified for hospice service. Why in the world would a your PCP do this? Because their doctor works for a specific hospice who pays him a salary to manage a hospice team. The more patients the hospice has, the more successful the hospice is and of course, he wants to work for a successful hospice because that helps his paycheck keep coming. It doesn’t matter if that is who his patient wants for their hospice care, it is all about his paycheck. He even threatened his patient “If you go with another hospice, I won’t have you in my office again, for anything”. Of course, patient choice is protected by Medicare regulations, but most patients don’t know that.
2. Many PCPs are uncomfortable with introducing the idea of hospice for a variety of reasons. Some feel that it takes away a person’s hope if we start to talk about planning for end of life and decline. What they don’t realize is that for many people, health issues have reached a point where they are in and out of the hospital or MD office very frequently because symptoms are out of control and they require much closer management than an appointment every 2-3 months just to stay stable. Because they don’t live with they patient, they have no idea how the care needs have gone up and up over time and how much the demand on the patient and the family is increasing or how much hospice could help.
Some PCPs think hospice is about taking away things-taking away the patient’s right to continue to see the PCP-WRONG. Patients can still see their PCP if they want to. Taking away patient’s medications for other health issues-WRONG, patients can still take their medications for health issues not related to the hospice issue, their insurance will still cover them. Taking away hope-WRONG, hospice can help to give patients a better control of pain and nausea, shortness of breath, agitation, anxiety, sleeplessness because the hospice team sees the patient as often as necessary to get problems under control. That can mean every day, at night, on the weekends but most importantly AT THEIR HOME, WHERE THEY LIVE. Patients don’t have to leave home to be seen for problems. They don’t have to go to the ER or wait in the MD office. Caregivers don’t have to worry for 2-3 hours if they are doing the right thing while they wait for a call back, the hospice nurse calls back within minutes.
Some PCPs just don’t have the skills or the courage to say what needs to be said. “I don’t have any other treatments or medications to offer you that can restore your health or change the course or your illness. It is time for you to focus on the fact that you have a limited amount of time left. I may be able to do some things that will keep you alive but I cannot keep you living. I can probably keep your body going but you will continue to decline and anything that I can offer you at this point may buy you time but it will most likely rob you of energy or cause you more suffering or keep you away from those you love or the things you might like to do and some things I could do might even cause you to pass away sooner.” And let’s face it, when our doctor’s say this, what do we say? “I want a second opinion”. That of course is our right, but the likelihood of finding a doctor who says what we want to hear “Well, we might be able to try this or that” is pretty high. Because it is easier to promise a possibility of a good outcome than it is to watch a family fall apart at the thought of a tragic outcome. But is it the right thing to do?
So no, your doctor may not let you know. How do I know? I meet and work with exhausted, heartbroken, financially strapped, angry families who have struggled for weeks or months on their own only to find out they might have had a hospice team and the Medicare/Insurance hospice benefit helping them for a long time if their doctor had just let them know.