Quick summary
As a caregiver, you have a vital role to play in the relationship between your parent and his medical care providers. Improving the communication between your parent and his care providers involves attention to detail, an ability to see both sides, consideration of your parent's emotional as well as physical symptoms, and a willingness to face the most difficult news. You'll realize the benefits in your parent's treatment and in the time you spend together.
Recognize your role in the doctor-patient relationship
? Taking an active role As a caregiver, it's easy to feel that you're just an observer on the sidelines when it comes to the relationship between your parent and his doctors, but nothing could be further from the truth. There are going to be many times when your parent is simply too exhausted or overwhelmed to make decisions, and you're going to find yourself in the hot seat. There will also be occasions when your parent is in too much pain or feeling too sick to make a call to the doctor, and it will be you on the phone trying to describe the problem.
"The first thing I tell caregivers is to go to all of your parent's appointments, even if your parent doesn't want you to," says Michele Francis, a licensed clinical social worker at the University of California, San Francisco, Comprehensive Cancer Center, and manager of the Ida and Joseph Friend Cancer Resource Center. "People are shocked by how exhausted they feel while battling cancer and how poorly they retain information. Having the caregiver involved in the doctor-patient relationship can make a big difference in the outcome of treatment."
What follows is advice from the experts on how to make your role in this three-way relationship work for everyone.
Maintain detailed records of your parent's symptoms and daily experiences
? Keeping a daily log When you talk to the doctor about problems your parent is experiencing during treatment, be as specific as possible. The best way to do this is by keeping a log describing exactly what happens each day.
"You need to become very good at assessment and communicating what you're seeing," says J. Redwing Keyssar, palliative care coordinator for Seniors-at-Home, a program of Jewish Family and Children's Services of San Francisco. "You want to be able to say things like 'We gave her this medicine and this to eat, and she got sick,' or 'For the past three days at 3 p.m., the pain has gotten out of hand.'" This type of detailed description is extremely helpful to the oncologist when selecting the right pain medication to try next.
? Writing it all down Even when you're certain you'll recall a particular reaction, write it down. No one's memory is good enough to recollect every detail of another person's ups and downs, and the stress of seeing your parent go through cancer treatment is likely to make your own memory less reliable.
Keep notes on your parent's doctor visits, as well
? Making sure everything is clear When you accompany your parent to appointments with his oncologist and any other medical staff, including nurses, pathologists, and surgeons, write down as many of the doctor's comments as you can, then research anything you don't understand when you get home.
"Bring in all your questions and take notes on the answers, then go over it all with your parent after the appointment to make sure you both understood exactly what was said," says Francis. That way, the next time you return, you can ask specific questions and not waste the doctor's time.
? Preparing for office visits When people aren't prepared for appointments, it can be very frustrating for doctors, since they just don't have the time to explain every little thing, says Francis. "The doctor's expectation is that the patient will educate himself."
Be a strong advocate for your parent
In this role, your job is to make your parent as comfortable as possible -- and that may mean insisting that the doctor pay attention and take action. "You need to hone your basic communication skills so you can say clearly and directly, 'This is what's interfering with my parent's quality of life right now,'" says Keyssar, "and describe in detail what's happening, when it's happening, and what seems to make it worse or better."
? Being a team player It's best not to be antagonistic. In fact, it helps if you can develop a friendship with the person you're most likely to deal with on the phone, whether it's the oncologist, a nurse, a nurse practitioner, or the office manager. Stay calm and assume that you're all on the same side and want what's best for your parent.
Be a strong advocate for the doctor, too
It's likely that your parent isn't always going to be the ideal patient. He may resist treatment, forget to take medicines, or refuse to follow the oncologist's advice to get more exercise or stop smoking. When this happens, your role is to be on the doctor's side. After all, the goal is for your parent to feel better.
? Working together When the doctor recommends behavior changes, offer assurance on the spot that you're going to work with your parent to follow the recommendations. This may require some strategizing between you and your parent's doctor -- even out of your parent's earshot. A quick side conversation about your efforts to encourage your parent to comply with treatment recommendations may give you some new ideas and lets the doctor know that you're doing everything you can to support her.
Consider your parent's mental as well as physical well-being
? Sorting out the cause Emotions run high during cancer treatment, and depression, anxiety, and other psychological issues are all too common. In fact, emotional or psychological issues can often lead to physical symptoms and complicate treatment. When your parent is in pain or having other symptoms, it can be difficult to sort out the cause.
"There's a whole level of suffering that's really not physical at all," says Keyssar. For example, she says, anxiety often plays a big role in both triggering and increasing pain. "Sometimes you have to treat the anxiety in order to fully treat the pain," she explains.
? Dealing with difficult issues Communicating with your parent's doctor about psychological topics can be a very sensitive area, so Francis recommends talking to your parent openly before you contact the doctor. Explain that you can see that anxiety or depression is becoming a serious issue, and that you need the doctor's help to figure out what to do. "Often your parent will respond well if you say, 'I'm asking you to do this to help me,'" she says. "You can say, 'I'm trying to take care of you, but I can't handle this on my own.'"
If that doesn't work, Francis says, the next step is a tough-love approach: "I know you don't want me to talk to the doctor about this, but I have to because it's a serious problem. I need you to accept this so I can care for you."
Let the doctor know that you want to discuss bad news openly
"Your parent's health practitioners should notice if your parent isn't getting better or is starting to show signs of decline, and they should be able to talk openly about what's happening," says Keyssar. Because you see your parent often and you're hopeful for his recovery, you and your family members may not notice some of these signs. Or you may notice changes, but not recognize them for what they are -- the beginning of the end. A health practitioner can help you understand and adjust to what's happening.
Open, direct communication with the doctor about preparing for death can give you and your parent the gift of experiencing your last months or weeks together as fully as possible.
"It can be difficult when you realize after the fact that you had very little time left with your parent and didn't know it," says Keyssar, who suggests that family members ask doctors to be as straightforward as possible about what to expect when signs of decline start to appear. "It's wonderful if you know what's happening and can say to your parent, 'We've had some really great years. Can we have a conversation about how you want it to be as we get near the end? What are your hopes and fears? How can I help?'"
Comments Add a Comment