Back in the 1990s one of the largest studies to ever look at end-of-life issues, called the SUPPORT study, found that less than one in four seriously ill patients ever talked to their doctor about how or where they wanted to end their life. Ninety percent of Americans say they would like to die at home. Although things are starting to change, four out of five of us still end up dying in a hospital or other facility, often unconscious, alone, and attached by tubes to machines that only prolong suffering.
"Most physicians report they would not discuss end-of-life options with terminally ill patients who are feeling well, instead waiting for symptoms or until there are no more treatments to offer." —Cancer Journal
Despite the importance of discussing end-of-life care, or palliative care, with their patients, a recent survey of doctors treating terminal cancer patients published in the journal Cancer, found that end-of-life issues like time left to live, do not resuscitate (DNR) orders, hospice care, and preferred site of death were not being adequately addressed.
"One of the saddest things in medicine is to hear a patient’s family say that their loved one would not have wanted to die that way," says Elizabeth Collins, MD, a palliative care specialist at the Lahey Clinic in Burlington, Massachusetts. Palliative care is a relatively new medical specialty that tries to deal with end-of-life care in a more humane way. A way that puts the patient’s wishes first.
Understanding Palliative Care
According to the study in Cancer, only about half the physicians surveyed felt very confident in their ability to discuss end of life issues with terminally ill patients and a significant minority said they would only discuss these issues if the patient brought them up. "Not all doctors are good at talking about these issues," notes Dr. Collins. "A typical medical textbook may have a thousand pages on offering care for living, but only a page or two on offering care at the end of living."
Palliative care specialists are doctors who are trained and certified to expertly fill the need for end-of-life care. "Death is not a failure," says Collins. "It is a natural part of living and palliative care doctors believe that providing a good death, a death where the patient’s wishes are honored and the patient maintains as much dignity and control as possible, is usually possible with proper planning."
Palliative care begins when it becomes probable that a disease is still treatable but no longer curable. "It could be cancer, congestive heart failure, emphysema, or dementia," says Collins. "Eventually the goals of treatment change. What become important in palliative care are the relief of suffering and the avoidance of treatments that may cause harm and not prolong life."
"The goal of palliative care is not to remove hope but to remove fear and suffering." —Elizabeth Collins, MD
When To Start The Discussion
"The discussion should start now," says Collins. "Whether you are 25 or 95, you should start to think about who you trust to make medical decisions for you if you become unable to make decisions for yourself." Your wishes for who will make medical decisions for you, whether or not you want to limit treatments, and where and how you envision your last days are included in documents called advanced directives.
A "living will" and a "durable power of attorney" are examples of advanced directives. If you do not have one of these documents, your spouse or eldest child may become responsible for end-of-life decisions. But sometimes spouses or children may not be the person you want making these decisions, and sometimes spouses and children do not want to be responsible. That is why you need to start these discussions now.
Tips for Seniors and Caregivers
Don’t be intimidated by decisions about specific directives like DNR orders. Think in general about the quality of life you want and when you might want to limit treatment. You don’t need to make any final decisions now.
- Talk to a person you trust about your feelings and wishes. Ask them if they would be comfortable making sure that your wishes are followed.
- Go online and educate yourself about advanced directives. You can even download forms.
- Have a family meeting to talk about end-of-life issues.
- Once you are ready, talk to your doctor about how you feel. Don’t wait for your doctor to ask.
- Make sure your primary care doctor has a copy of any advanced directives you have made.
- When you and your doctor decide the time is right, ask for a palliative care consultation.
Doctors do have the ability and the responsibility to offer you end-of-life care that is compassionate and comforting. The most important thing we all need to do is accept that death is a natural and inevitable part of living. We all want to make responsible choices about how we live. Why would we want to leave choices about how we die to chance? The time to start talking about end-of-life choices is now.