Category: Caregiving, Hospice, & Palliative Care

Friday Giveaway – Free Health Research Worksheet for Patients

By Nathan Blake | 7/27/18
Project Manager, HealthWeb Navigator

Our team of medical reviewers talk with countless patients about health information on the internet. But many more patients don’t mention what they read online. Either they’re afraid the doctor will ignore them, or will think they’re being “difficult” for talking about what they learned, or they just don’t have time to bring it up.

Doctors and patients need to talk openly about what patients are reading. Browsing the web before and after a doctor’s appointment is something most of us do, as it lets us participate in healthcare decisions. But a doctor’s medical training can help us avoid dangerous or irrelevant advice. And if doctors refuse to listen to what patients have read, or if patients are afraid to speak up, then everyone misses out on valuable insights.

That’s why we’re providing this free resource to help you collect your thoughts before meeting with a healthcare professional. As you research health topics on the internet, use this worksheet to write down what you want to talk about with your doctor.

Make sure you’re clear from the start of your next appointment what you want to discuss and why it’s important to you. Then, let your doctor respond, and write down their thoughts too. Together, you can come to a decision about what to do next.

And don’t forget to browse our collection of reviews to find the most reliable health websites available today!

Download file: Health Research Worksheet

HealthWeb-Navigator-Health-Research-Worksheet

 

Planning for the End of Life: What Baby Charlie Can Teach Us

By Mark A. Kelley, MD |8/7/17
Founder, HealthWeb Navigator

Charlie Gard was a one-year-old boy who had a rare genetic disease leaving him blind, comatose, and unable to breathe on his own. This metabolic disorder can be fatal and has no known cure.

Charlie’s parents wanted him treated with experimental drugs in the hope that a miracle would happen. As reported in the press, the British medical and legal community considered this care futile and blocked it.

This sad story created a flurry of public discussion about ethics, end of life care, and patient and parent autonomy. Experts debated the wisdom of the parents’ decision. The discussion centered on whether the experimental therapy would help Charlie or make him suffer more.

These “end of life” issues have evolved during medicine’s successes over the last 50 years. Thanks to life-saving advances, premature infants have been saved. Organ transplants have given new life to patients with failing lungs, heart, kidneys, and livers. Many cancers are now curable.

However, there are limits to what medicine can do. Full recovery is rare among patients who have multiple-organ failure or advanced chronic disease. This raises the important issue of length of life versus quality of life.

As an intensive care physician, I have treated many patients facing this challenge. These situations are exceedingly difficult for everyone: patients, their families, and their medical teams. Emotions are magnified even more when the patient is young and/or cannot speak their wishes.

The major question for a critically ill patient is, “What happens next?” Sometimes, nature sends clear signals: the patient does not respond to maximum therapy, or there is no sign of brain activity. But more often the situation is uncertain. The patient may enter the twilight zone of the “chronically critically ill.” Such patients, who are often comatose, can be kept alive by machines that inflate the lungs, pump the heart, and dialyze the blood—all in the hope of a major recovery.

Research has shown that patients who need such advanced life support for many days have a grave prognosis. Those few who survive and leave the hospital usually die within one year and most never achieve full function. Physicians and families find it hard to know how aggressively to treat such patients without understanding their wishes.

This situation is preventable. While 90% of patients feel that they should discuss end-of-life plans with their family, only 27% actually do so. Knowing such plans in advance is invaluable for developing a treatment plan that respects the patient’s wishes. However, unless patients tell their families beforehand, how can anyone know?

Fortunately, progress is being made, thanks to public support and resources such as The Conversation Project. This advocacy program encourages everyone to “have the conversation“ with family when there is no pressure to make a hasty decision. The group’s website has helpful information and tools to guide the discussion. As some experts have written, we make plans for our estates—why not include our end-of-life wishes?

Charlie Gard’s parents were in a very difficult situation. They had to make a decision about his care and initially defied the medical/legal community by choosing aggressive therapy. Many supporters, including Pope Francis and President Trump, rallied to endorse the parents’ position.

That was before the medical facts became clear. According to published reports, experts agreed that Charlie’s disease had permanently damaged his brain and that he would never awaken or breathe on his own. The experimental therapy would not reverse his current state of suffering but could possibly make it worse.

Once they understood these facts, Mr. and Mrs. Gard chose to remove their young son from life support, and he died peacefully. We can sympathize with their painful and loving effort.

The Gard story has a message for us all. As a comatose child, Charlie could not speak about end-of-life decisions—but, as adults, we can. It is important to remember that the end of life is inevitable and that we will all experience it some day.

Having “the conversation” can relieve our loved ones from a responsibility that rightfully belongs to us. It may be the most important gift we can give them.

The “Conversation Project” — Planning for the Future

By Mark A. Kelley, MD |07/15/16

Most of us make future plans about careers, finances, retirement etc.   However, few of us plan for the end of our lives.

Medical science has made great strides in treating complex diseases like cancer, heart failure and diabetes. Nonetheless, for these chronic diseases, complete cures remain the exception, rather than the rule.

If you have helped someone with life-threatening disease, you know the stress involved. As the disease progresses and end of life is near, many difficult issues arise: Is a cure still possible?   Will more treatment be helpful?   Will the treatment be worth the result? Will the end come soon?

As an intensive care physician, I have seen patients and their families grapple with these dilemmas in “crisis mode”. This happens when a gravely ill patient’s wishes at the end of life were never discussed. Now, with very little background information, the family and physicians must make some decisions to guide the patient through life-threatening challenges.

The Conversation Project” is addressing this problem. The objective is to facilitate discussion about patient’s goals well before any crisis. The conversation between the patient and his/her family and physician assures that everyone involved knows the patients’ desires.

The Conversation Project describes research showing that patients want this discussion but need help.

1. 90% of people think that talking about end of life care with their loved ones is important—only 27% do.

2. 82% say it is important to put their wishes in writing but only 23 % have done so.

3. If seriously ill, 80% of people would discuss end of life care with their doctor, but only 7% actually do.

The “Conversation Project” has developed tools to facilitate communication about end of life care. Personally, I have found their approach helpful with both my patients and my family.   The best time to begin the conversation is when there is no pressure for an immediate decision.   Ideally, the patient feels well, and family members and physicians can participate.

The most important part of this conversation is for informed patients to set their objectives for the end of life. Patient preferences vary and can even change depending on circumstances. For example, one third of adults would continue treatment even if their disease were incurable. However, other factors can change that decision.   Over 52% of patients with incurable disease would stop treatment if they must depend on a family member for care.

In a third example, some patients would prefer to stop treatment but continue anyway. They do not want their loved ones to remember them as “giving up”.   I have found that this dilemma can often be solved by a candid discussion with the patient, physician and family members together. In this session, the doctor discusses the medical facts, and the patient describes his/he true feelings and desires. With everyone hearing the same important information, the family usually rallies in support of the patient’s decisions.

These circumstances can differ and the details are very personal. However, there is only one “best” outcome: that each patient communicates their plans and desires for the end of life.   That important action assures that the patient’s wishes are fulfilled and greatly reduces emotional stress for all.

Have you and your family had “The Conversation”?   Check out the Project website (http://theconversationproject.org) for some valuable tips.

 

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