Expert: Mary Gordon - 1/6/2010

Question
My mother has had dementia for over 7 years.  She is confined to a wheel chair with no motor skills left and can not care for herself at all.  She is at the stage where she barely speaks and I do not believe she knows what is happening around her.  She has a wound in her lower leg that will not heal. She has been seeing a wound specialist for a few months now. Yesterday, a Vascular surgeon suggested to my dad (her caretaker) that they need to amputate her leg above the knee due to no blood flow in the leg.  Does this seem like a good choice?  How do we make the right choice and also control the pain?

Answer
Hi Kris, you probably know there are major risks associated with the surgery for a person like your mother. They are scary, and you are right to be asking questions.

The general anesthesia alone will likely cause a major and permanent decline in cognition - no one really knows why this is, but it is very common - not just for those with preexisting dementia, but for a very large proportion of elderly patients. Here is an article from 2004 on the subject.   
http://www.sciencedaily.com/releases/2004/10/041027142708.htm

Painkillers will make her dopey and less aware and alert, but I see that as less of a concern because their effects are short term.

Cognitive issues aside, surgical risks for a person in your mother's situation are very high. It is common for around 20% of the frail elderly who have an amputation for poor circulation (usually caused by peripheral artery disease brought on by atherosclerosis) will die in hospital. Above the knee amputations are usually proposed for more severe cases, and their outcomes in terms of mortality and complications are often worse than below the knee amputations.

Other general complications she is at very high risk for include problems such as chest infections, angina, heart attacks and strokes - her atherosclerosis ups her risk of cardiovascular problems. Being bedridden can bring on pneumonia. Because her mobility would be restricted after an amputation, pressure sores can also develop, and a concerted effort would have to be made to prevent them.  Regular turning to relieve pressure is also important.

Other issues can include wound infections that can develop in the stump - because of her poor circulation, she will be more at risk for this than some other patients.  Antibiotics are given to reduce the risk of infection developing at the time of surgery.  The stump can sometimes fail to heal or breakdown as a of infection or a poor blood supply.  When this happens it can sometimes mean a further operation to revise the amputation or to remove more of the leg. Further, sometimes contractures can develop in the hip joint and once present and established can be impossible to correct.  The  hip will not straighten.

Deep venous thrombosis can also occur because the veins in the leg will have been tied during the amputation operation and because of the immobility after the surgery.  Blood thinners (heparin) will usually be given to reduce the risk of blood clots developing.

Phantom limb is the sensation of still being able to feel the amputated limb.  Most amputees experience this sensation, although the intensity can vary from person to person - it can be mild and self limiting, but in a few patients phantom limb pain can be a serious problem and difficult to treat.

I guess the question for you now is - what are the aims for her care? This is a key question for you to contemplate, and one you need clarity on. What are her doctors hoping to achieve? Are their goals the same as your goals? Do their goals take into account the big picture - her as a total person, given her physical and mental condition.

Is Is she currently in pain? Can that pain be managed other ways than the amputation? Is she in immediate danger of gangrene -is there any pressing need to amputate now?  What do her doctors currently see as her expected life span given her overall condition including her dementia? My suspicion is that no matter what treatment option is followed, she is unlikely to live longer than a year or two at best - and given that strong likelihood, what does your family want for her during that time ? What were her wishes for herself in terms of end of life?

The choices aren't easy. Quality of life has to be the guiding factor - her comfort and her peace. What will be the least distressing to her physically, emotionally, mentally. Will this surgery make her more comfortable? Or will it expose her to factors that will be reduce her quality of life. Extra time may not be worth the risks if it means more time to be miserable. Ask the doctors to be completely up front with you so you can weigh the potential risks vs. benefits.  

What would give her the best possible quality of life? Might it be time to contemplate palliative care? By that I mean, keeping her as comfortable and pain free as possible. Here is some information.
http://www.gilbertguide.com/articles/hospice-palliative-care-wheres-the-common-g...

http://www.nhpco.org/i4a/pages/index.cfm?pageid=4648

I'm not necessarily saying you are fully ready for palliative options, but they may an alternative to aggressive surgery that you might want to at least explore.

Hope this helps a bit. I know this is all very challenging to grapple with - and I know you care so much about both your parents and want to choose the most compassionate choice for your mother.  

Mary