Choosing medical care in advanced illness
Most people are used to going to the physician with a problem, and having that problem largely cured with treatment.
However there are some illnesses, such as end-stage heart, or liver disease or cancer, that can be slowed down but not cured.
Many advanced diseases can be treated in more than one way.
In that case, the choices between options often involve trade-offs.
One treatment might be more likely to prolong life, but have a greater risk of side-effects with potentially longer hospital stay and more procedures.
Another treatment might be less risky, but also less likely to extend longevity.
All this means that patients with life-threatening illnesses often have difficult choices to make.
They might have to weigh the pros and cons of therapies, and decide — with help from their doctors, nurses, families and friends — which treatments are right for them.
Take part in your own care decisions
If one has a life-threatening illness, it is important he or she takes part in his or her own care.
Any time a therapeutic option is offered, the following four concepts should be understood:
• What are the benefits of this treatment? Primarily is it likely to help one live longer and/or, the most important question, will it reduce or prevent symptoms?
• What are the side-effects of this treatment?
• What are the other therapeutic alternatives available?
• What will happen if I do not have this treatment?
When patients and doctors work together to make decisions, it is called “shared decision-making”.
Research shows that people who take part in shared decision-making are more likely to get the care they want and to feel satisfied with it.
Healthcare professionals are experts in medicine but they are less knowledgeable in what matters most to you.
That is critical, because two people could have exactly the same medical problem, but choose different treatment pathways based on how they feel about the options offered and what they value most.
As an example, two men with the same form of advanced cancer: one might choose to have a type of treatment that makes him feel tired and weak because it might extend his life by nine months so he could attend his daughter's graduation.
The second man might prefer to skip the treatment and instead have more energy, even if this means that his life might be cut a little short, so he is able to dance and enjoy his daughter's wedding in three months.
In this situation, there is no one right answer. There is only a right answer for each individual.
After you decide on the large scheme of your care you should think about how aggressive you would want the approach to your care to be if things do not go as well as planned.
There are two main approaches: Do you want healthcare professionals to do everything possible to keep you alive, including care escalation with artificial blood circulation support, invasive ventilation and advanced resuscitation? Or would you rather let nature take its course as long as you are symptom-free?
It is important to address the aggressiveness of care before one gets very sick so that the patient and his or her loved ones do not have to make big decisions under pressure and emotions. The questions asked here are called the “what-if” questions:
• What if I stop breathing, do I want to be put on a breathing machine?
• What if my heart stops, do I want the doctors and nurses to try to shock my heart back into action?
• What if I cannot eat, do I want a feeding tube placed in?
Yes, paperwork! After you answer for yourself the three “what-if” questions, you should make your wishes known. There are legal documents that can be used in that case, these are called “advanced directives”. The two most useful types are:
• Healthcare proxy (or medical power of attorney)
It allows you to choose someone to make medical decisions on your behalf if you become unable to do so. When you choose a proxy, it is important to talk to that person about the things that you want and do not want.
• Living will
It allows you to choose the type and aggressiveness of care you want if you become unable to speak for yourself.
For instance, a living will allows you to document whether you want CPR, a breathing tube or a feeding tube placed in, or if you would rather have a DNR/DNI plan.
This special type of palliative care includes regular comfort care, but it also includes a host of other special services. For example, people in hospice care can get:
• Nurses and aides who come to their home
• Special equipment, such as a hospital bed and oxygen to use at home
• Counselling and support
Hospice care is only for people who are not expected to live longer than six months, but this does not mean that hospice care will stop if a person lives longer.
People usually get approved for hospice care only if they are willing to withdraw treatments meant to cure their advanced illness or help them live longer.
People who choose hospice care often decide that they want to spend their last days at home, and they can get drugs and helpers who can make the final stage of their illness as comfortable as possible.
• Joe Yammine is a cardiologist at Bermuda Hospitals Board. He trained at the State University of New York, Brown University and Brigham and Women's Hospital. He holds five American Board certifications. He was in academic practice between 2007 and 2014, when he joined BHB. During his career in the US, he was awarded multiple teaching and patients' care recognition awards. The information herein is not intended as medical advice nor as a substitute for professional medical opinion. Always seek the advice of your physician. You should never delay seeking medical advice, disregard medical advice or discontinue treatment because of any information in this article.
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