Patients Uncensored: May 2016: Patient Opinion on End-of-Life Care

Patients Uncensored: May 2016: Patient Opinion on End-of-Life Care

To Patients and Caregivers,

Patients have a voice in patient centered care.  This is your forum to make your voices heard.  Tell us what you like, what you don’t like, and why.  You will be helping future patients who follow in your footsteps.

Question of the Month

If you could give advice to a new oncologist or other medical specialist who treats very ill patients every day, what would it be? What can they do to make you feel safe?  How can they help to improve your experience at this difficult time in your life?

6 Responses to Patients Uncensored: May 2016: Patient Opinion on End-of-Life Care

  1. Be honest, even when the answer is, “I don’t know.” I once had a doctor answer one of my questions in this way, but he assured me he would find the answer. Thirty minutes later, he returned to the room with more information. I trusted him from that moment on. Had his response sounded vague or unsure, I wouldn’t have believed anything else he had to say.

  2. I am afraid that I might not survive this disease even though I may not show it. I want you to answer my questions without making me feel rushed or that my questions are not important enough for you to answer.

  3. Don’t rush me. I know you must be busy, but I need my questions answered. If you don’t have time to answer them all, then find someone (like your nurse maybe?) who is able to that while I am at your office. I don’t want to go home and have to wait 3 more weeks to find out what the answers are until I see you again at my next appointment.

  4. I want the doctor to know me, not by my name on my chart, but know me. I know they’re busy, so not on a personal level, but on a medical level. When you see me, know my name, my diagnosis and something to show that they are aware of my condition. Then I will trust you and feel like I matter.

  5. People who are seriously ill don’t like to be kept waiting. We’re often in pain and or nausea. We are often losing control over basic functions. I recently told a physician, whose clinical skills I really trusted, that I was no longer willing to deal with his consistent overbooking. I saw him 6 times in his office. The shortest wait was 50 minutes after the appointed time. The longest was just shy of 2 hours. The average about 70 minutes. The partnership’s waiting room was always overcrowded. The wait times were a frequent topic of conversation.

    In turn he was remarkably open with me, admitting he joined the practice without understanding its expectations. He didn’t call it a bad practice, but said he thought their “productivity expectations” were unrealistic.

    Every doctor is going to be late occasionally. Patient’s understand that. Doctors who consistently overbook their time are either greedy or have joined greedy practices. It’s that simple.