Written By: Ira Byock, MD
If you or a close friend or relative has recently been diagnosed with cancer or heart failure or Alzheimer’s disease or a similarly worrisome condition, it’s likely you are feeling a little confused and vulnerable. Suddenly you are on a difficult journey that you didn’t choose to make. It’s understandable to feel as if you were lost in a strange land.
These days, decisions about treatment are often complex. America’s healthcare system is well-oiled to treat disease but falls down when it comes to communicating, preventing problems, or guiding people through predictably difficult times. People frequently feel uncertain that they are doing the right things.
To Become an Advocate for Yourself and Your Family
It’s important to be prepared and to advocate for yourself and your family. Here are some things I commonly suggest in order to avoid problems and get the best care possible for yourself and those you love.
First, it’s important to find doctors in your area who are experts in your condition – and then to work closely and effectively with your doctor and other members of your healthcare team. Although we wish that every physician had a great “bedside manner,” it is not necessary for each doctor to have a warm personality. What IS important is for you to be able to have confidence in your doctor and feel that he or she genuinely cares about your wellbeing. If that is not true, look for a different doctor. Feeling comfortable with your doctor is essential to your care.
Second, there are a few basic tips that can help you work effectively with your healthcare team. Here are some of my favorites:
- Write down the questions you have for your doctor. It can be scary to see a specialist for cancer, memory loss, or serious heart, lung, kidney, or liver problems. It is not easy to remember all the questions you have had about your medications, symptoms, or treatments for your condition. Having a list of questions that you’ve prepared can help a lot.
- Bring someone with you to doctor’s visits – a spouse, sibling, or adult child – to support you and lend another pair of ears to the discussion. Consider recording the visit.
- Keep copies of your health record – particularly, test and biopsy results, lab reports, physician history and physicals, and hospital discharge summaries. It is your right to ask for these.
- Keep a daily log of your symptoms and the medications you take.
Get a Second Opinion – and Maybe a Third and Fourth Opinion
When faced with a dangerous diagnosis, second opinions can be important in getting the best treatments. We are talking about serious illness that threatens to shorten one’s life. Don’t feel awkward about gathering second – or third or fourth! – opinions from the best healthcare centers and teams you can find. Use the internet, local experts, and word of mouth to determine which doctors or centers are best for you.
Palliative Care – The Most Important Medical Advance Few People Know About
I strongly advise that one of the medical opinions you seek is with a palliative care specialist physician or team.
Because palliative care grew out of hospice, many people assume that receiving palliative care means giving up. Not true. These days, through programs like Iyashi Care, palliative care is provided together with treatments for cancer, heart, lung, liver, kidney and neurological conditions.
Having a specialized clinical team working to treat pain and other physical discomforts, as well as optimizing a person’s appetite, digestion, and (all important) bowels, allows people to sleep better, be more active, and at ease. They simply do better both physical and emotionally.
It’s not surprising that people with cancer or other serious conditions who receive palliative care along with disease treatments tend to feel better – and sometimes live longer!
The extension of palliative care into one’s own home when a person is nearing the end of life is called hospice. Hospice is essential in managing medical matters and supporting families to care well for people through the end of life. Hospice nurses, social workers, and physicians are competent, proactive, and responsive.
Remember, at the end of the day, what matters most is getting the best care possible for you and the people you love.
About the Author
Ira Byock, MD is Founder & Chief Medical Officer, Institute for Human Caring of Providence Health and Services. He is an active emeritus professor at Dartmouth’s Geisel School of Medicine and author of Dying Well (1997), The Four Things That Matter Most (2003), and The Best Care Possible (2012). More information at IraByock.org