Palliative Medicine for Serious Illness: It’s About Time
by Dr. Ira Mandel MD, MPH, is Medical Director of Pen Bay Healthcare’s Hospice and Palliative Care program
Time is precious. It is spent and used up easily but we can’t buy more for all the money in the world.
Also, time is short. For young people, it may seem limitless. As we get older and witness the passing of family, friends and neighbors, we become more aware of life’s limits on time. We remind ourselves to live our lives more meaningfully, that is, until we unfortunately get wrapped up in the busyness of life.
Making best use of time is something we strive for our whole lives. If we are lucky, we can renew our efforts to live well and wisely every day.
When faced with a serious, potentially life-threatening problem, it becomes even more important to use our time as best we can. We spend our time trying to get the best treatment in an effort to get better. We try to get better so that we will have more time.
The most difficult part of managing a potentially life-threatening illness is to know when treatment will no longer prolong our lives. It is very hard to know when to stop the chase to be cured and when to focus on making the best use of our limited remaining time.
A recent patient of mine expressed gratitude for being told that there was no treatment for his fatal neurological condition. He was thankful to know that he probably had at least a year to live. He was especially grateful to know that pursuing medical treatments would only be a waste of his limited time. It freed him to do the things he loved best with the people who mattered most to him.
Another patient of mine was being treated for a cancer that the doctor told her could not be cured but could be slowed by chemotherapy. Later, the truth emerged that the chances were very low that this treatment would prolong her life significantly. Receiving the chemotherapy meant many doctor visits, lab tests and x-rays, on top of many days feeling poorly from the chemotherapy treatments. There seemed precious little time left in her days other than time spent fighting the cancer. Sadly, her death came suddenly when she became very ill after a treatment and died of infection. She never had time to say her good-byes, leave lasting messages for her grandchildren, nor do the things she loved one last time and to take care of other unfinished business.
Unfortunately, many people miss the opportunity to live the end of their life the way they would want because they spend all their time trying to be cured. In almost all these cases, most reasonable doctors could have told them that their time was short and advised them to get their affairs in order. However, research has confirmed, that it is actually uncommon for doctors to inform their patients who are nearing death because the doctors are uncomfortable giving bad news. It is often easier for them to recommend more treatments. Patients, ever hopeful that more treatments will work and unaware that death was so near, allow themselves to use up their final month, weeks and days getting futile treatment, and often die before they can get their affairs in order.
Some request their doctors to “tell the truth” and to “not sugar coat it” when learning of bad news. Others would rather not know all the facts or would prefer to focus on hopeful news. Those who request “the truth” can still be hopeful while being realistic and making wiser decisions about how they can spend the time that they have left. Those who avoid fully understanding “the truth” may make poor choices about how to use their remaining time.
Think about it. The time is yours to use it well or to let slip away until it is too late to do the things that are very important to you.
Many significant improvements have occurred in healthcare because the public has taken a more active role. In the past, doctors did not routinely check patients’ cholesterol or order mammograms until patients started to ask for them. Patients with AIDS pushed their doctors to use the most effective treatments when their doctors seemed slow to get on board.
When you, your family and your neighbors take an active role, doctors will begin to feel more comfortable to “tell you the truth” about the time you have left and what further treatment will or will not do for you. Try to become one of those patients who ask their doctors to “tell me the truth” and let them know you want to make the best of your remaining time upon hearing bad news.
I will help lead this effort of change but I need you all to be active participants in your healthcare to make sure your time is spent the way you would want. Your time is precious. Protect it by speaking up, learning the facts and making wise decisions for yourself.
Then spend your time well! It is your choice.
Ira Mandel, M.D., MPH is a Palliative Medicine physician and is medical director of Pen Bay Healthcare’s Hospice and Palliative Care program. He provides compassionate care with a team of health professionals who honor the wishes of patients with serious illnesses. His monthly column seeks to inform the public about choices they may wish to consider. Disclaimer: All people described in this column are not actual patients but are derived from many hundreds of patients Dr. Mandel has treated over many years.