Healthcare News & Insights

End-of-life decisions: When is it too soon to broach the topic?

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A new survey shows most physicians are waiting much longer than was commonly thought to discuss a terminal diagnosis with patients. Is it the right thing to do?

The research, published this month in Cancer, surveyed more than 4,000 doctors who treated cancer patients. They were asked how they would broach discussions of several distinct topics with a hypothetical patient who had 4-6 months left to live, but was still feeling relatively strong and healthy.

The topics for discussion were the prognosis, treatment options (such as DNR orders, hospice care, etc.) and whether the patient wanted to die at home or in the hospital undergoing aggressive treatment.

Generally accepted guidelines are for doctors to open up the discussion of all three once the patient has less than a year to live. The survey showed that in practice, doctors wait much longer.

In fact, 65% of physicians said they would discuss the prognosis right away. But only 44% would immediately bring up resuscitation. The numbers were worse for hospice care (26%) and place of death (only 21%).

Most doctors said they wouldn’t bring up those topics until the patient started to feel worse or there were no further medical treatments to offer.

The researchers didn’t ask the doctors to explain their reasons for postponing the discussion, but it’s safe to say it’s a combination of:

  • not wanting to destroy patients’ mental state while they still feel healthy
  • some discomfort on the doctors’ part
  • not wanting to provide more information than is absolutely required (or asked for).

But the question remains: If doctors wait until the person is already at death’s door, does that really give the patient enough time (and mental clarity) to make the best decisions about treatment options — let alone to get their personal affairs in order?

Some experts say no, citing the fact that while most Americans say they’d prefer to die at home in peace, the vast majority of us die in the hospital, hooked up to a variety of equipment. Delaying the discussion also means some patients may continue treatment with false hopes for a cure that will never come.

On the other hand, many physicians feel that breaking the hardest news too early just saps patients’ energy and can diminish the quality of the time they do have left.

Where do you stand on this difficult question? Share your thoughts in the comments.

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Comments

  1. Mary Hargadine says:

    My sister was told on December 15th, 2009 that she has just a couple of months left and her physician’s goal was to get her stable and comfortable and move into hospice when she was able. She has been at home for the past 3 weeks doing well for the circumstances. I can’t speak for everyone but I think it helped that her physician sat on a board of a local hospice facility and has more experience with this type of situation. I have found that in her situation, she wanted to know the timeframe so she could be prepared and at the end of the day, only God knows how long we all have here. My advice is to be upfront and truthful in all situations especially when dealing with end of life discussions.

  2. I can think of a number of ways to respond to this article, from the aspects of paternalism to saying that hope is not given nor is taken away, it is found from within the individual as he or she takes on this journey.
    My mom’s oncologist was relieved the day he had to tell her that her cancer was back and had spread to her brain, that she brought up the fact that she did not want further treatment. It was not until she broached the subject that he said that from a medical perspective that was the most appropriate way to go. We need to understand that greater than 75% of people want to know earlier rather than later. May we continue to gain greater knowledge about the patient…it is after all…about them..not us….

  3. Being a nurse in a long term facility I have seen so many times when we thought someone would be gone any day and then something happens and they make a complete tern around and live for a long time. I realize that is a little different than being diagnosed with a terminal illness, but only god knows when your time is up. I believe the doctors need to be honest and open with the patient and explain to them what the prognosis is, the average time that most people have left and give them all the options up front so that person can make plans for the future and live the rest of the time they have left as if there is no tomorrow. Some people do give up when they find out they have a terminal illness but alot do not. My brother was diagnosed with leukemia about 4 years ago and we didn’t think he would be around today but he is and he loves life. The doctors only gave him up to 2 years but he never gave up and because of his strong will he is still here.

  4. Having just experienced the passing of my father-in-law, I wish his caretakers HAD been more forthcoming with their opinions. Unfortunately, our perception is in their quest to be kind and to “explain” to my 85 year old mother-in-law, they painted a picture that provided her and most of the family false hope. Working in the medical field, but living in a different state, I found myself having to have phone conversations to get the real details and then relay those to the rest of the family. In our situation, mom got the call saying dad “needs some help breathing” – which once she gave the ok for we found out was a ventilator – something he would not have wanted, but did not have a Living Will to state. Finally, we got a call that dad needed “temporary dialysis” – however his kidneys had failed and had been failing for WEEKS. Dialysis was begun, because my mom receive a call from 2 nurses asking permission – no surgeon talked to her directly – and my father-in-law slipped away from us that same day. Death and the preparations for death are not easy subjects, however those of us in the medical field need to be more aware of the patient and the familys understanding and to provide clear and concrete reasons for services to prolong life as well as the reasonable consequences of not providing those services. Is it “reasonable” to provide these services to an 85 year old in already compromised health to place multiple tubes and wires vs a simple death with dignity.

  5. Terry Maves says:

    My sister in law was diagnosed with ovarian cancer in July of 2009. She died on January 31st, 2010 almost 7 months to the day after diagnosis. Along the journey she and other members of the immediate family asked for information about an outcome. She wanted to know. She was a fighter. She was an advocate of telling the world about the importance of finding a test for early detection. She wrote an article in our local news paper telling the public about the lack of early detection and treatment for this disease. She even wore teal nail polish (the color of ovarian cancer) on her finger nails in her casket so visitors would ask questions and we could spread the message.
    My sister in law was moved to hospice on Friday afternoon (January 29th) at 1:00 P.M. and died Sunday evening at 6:00P.M. The doctor who lead the discussion did a wonderful job of explaining the circumstances. However on Tuesday evening of that week we were still discussing how we would continue the fight when information of tests became available in the first week of February. The next day (Wednesday) she was admitted to the hospital and never left. The next 96 hours were hectic. I had to call a high school friend who is an attorney to help me get papers in order. While the attorney drew up the papers on Friday afternoon, I frantically searched for two people to witness the signing. I found out that the witnesses could not be family members or health care workers. My friend came to my sister in law’s bedside at 5:00 P.M. to explain the information and have the papers signed.
    In reponse to the statement in the article above ” But the question remains: If doctors wait until the person is already at death’s door, does that really give the patient enough time (and mental clarity) to make the best decisions about treatment options — let alone to get their personal affairs in order?” I answer with a firm NO! I am a firm believer in a positive attitude to fight these dreaded problems, but I applaud you in raising the questions in this article. We have to let patients know their circunstances. By reading and responding to this information, I hope physicians who fight this battle with patients everyday will come forth sooner with information. Especially when the patient asks.

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