Alone and afraid: When family support for diabetes patients falls short

In most of the podiatric, or foot care, patients I see, families are very supportive, and I love that. Painful foot conditions such as bunions often affect the patient’s mobility, quality of life and pain in other parts of the body due to altered gait or uneven pressure on the joints. Family support is enormously helpful. But one group of my patients—frankly, the ones who need it most—often show up to their surgical appointments alone: people who are facing diabetic foot amputation.

I always feel a surge of emotions when this happens. I feel upset for the patient, who must be afraid and in pain. And I feel regret for the patient’s family, whom I may never have met, for abandoning the patient in a time when family support is crucial.

Be there for your friends and family when #diabetes patients come for surgery. They need family support. It’s so important!- Dr. John Steinberg, via @MedStarWHC

When I ask patients if I can reach out to their family, they often decline and express guilt: “I’ve done this to myself, so here I am, alone.” But this couldn’t be further from the truth, and no patient should have to face amputation, or any major surgery, alone.

Diabetes: An “invisible,” taxing illness

Diabetes, like many other “invisible” illnesses, rages inside a patient’s body and manifests in visible problems only after the disease has progressed. This can be due to the nature of diabetes, improper care or lack of education about the disease. As a podiatrist, I care for patients who suffer from painful diabetic foot conditions such as ulcers, which are sores that won’t heal, and diabetic neuropathy, a type of nerve damage. In severe cases, the foot cannot be saved and must be amputated to prevent further complications.

Related reading: Saving limcs and improving lives: The Center for Limb Salvage

Frankly, diabetes does not affect only people who don’t take care of themselves. It’s true that lifestyle choices weigh heavily on type 2 diabetes risk and outcomes, and these choices affect the health of people who have type 1 diabetes. The same is true for many serious diseases, including many types of cancer. The fact is, diabetes has a shameful reputation of being “the patient’s fault,” and it’s time to put a stop to that.

Sometimes, family members become used to their loved one having some sort of surgery or medical complication. Diabetes can ravage the body, and in advanced cases, multiple procedures are common. Some of our patients are almost emotionally detached from surgery. “It’s just another procedure.” But I know if I were on the operating table, even though I perform surgeries regularly, I’d want someone there to hold my hand and wish me good luck–regardless of how many times I’d been in that position.

Too many patients suffer because of their families’ emotional turmoil surrounding their disease. No one wants a loved one to be ill, and the natural human response is to look for reasons to justify why a disease developed. We do this unconsciously to free ourselves from guilt and look for a way to reconcile ourselves with the reality of the situation. And, unfortunately, it’s easier to place anger and blame solely on patients with diabetes than it is with patients who have other chronic illnesses. “If only they would watch what they eat, exercise, lose some weight, they wouldn’t have gotten sick.”

Diabetes is more complex than “If this, then that.” While lifestyle choices can reduce a person’s risk, other physical and environmental factors affect a person’s health in ways that aren’t always obvious to family members. For example, research suggests that a person’s genes may affect their risk for type 2 diabetes. Even with preventive care and education, people in this demographic still may be at increased risk.

How we help families support loved ones with diabetes

I love seeing families who still take every surgery as something important and an opportunity to improve their loved one’s condition. But, as mentioned, chronic disease can drive a wedge between patients and family members. It’s important to my team to try to reconnect patients and families and bridge that gap in support. We always offer to reach out to family members on behalf of the patient, and we offer programs and support services that can help family members cope and learn to be more engaged with their loved one’s health.

Of course, the need for support extends far beyond when the patient leaves the operating room. Losing a foot or a leg is a major life-changing event. Mobility changes and decreases in perceived self-worth can spiral patients into depression, and modifications may be necessary to accommodate a wheelchair or other equipment the patient needs.

Home care nursing or care in a rehabilitation program can take an enormous load off of family members. The nurse can help with questions about the condition, recovery and wound dressing, as well as keep an eye on the patient’s emotional state. This attention and care allows the family to focus more on supporting the patient day to day. Many insurance plans cover home care nursing, and we can help guide families through the process of setting up care for loved ones. This type of care is short-term. Thinking long-term, families must pull together to increase the chance of a positive outcome for the patient.

I can’t stress enough that education is among the most important components for families to create a safety layer around their loved one. I urge family members of diabetes patients to take a step back and process their negative emotions surrounding their loved one’s disease. Yes, it is OK and natural to feel sad and angry when a loved one is diagnosed with a chronic condition. But it is not OK to step out of the picture and leave the patient to deal with the aftermath alone.

Saving limbs and improving lives: The Center for Limb Salvage

Keeping our feet strong and healthy is an important goal for us all. For people with diabetes, good foot health is even more important. That’s because people with diabetes are at an increased risk for developing problems with their feet. Without the right treatment, diabetic foot problems can lead to serious consequences, including amputation.  

We never want to see patients deal with the loss of a body part. That’s why my colleagues, Dr. Christopher E. Attinger and Dr. John S. Steinberg, work to save patients’ feet as part of our Center for Limb Salvage. I oversee this program in my role as regional chief of MedStar Plastic Surgery.  

Diabetes and its risk to the feet

Diabetes affects the body’s ability to process glucose. Glucose is a type of sugar that the body creates from food to fuel the body’s cells.  

If you have diabetes, your body has too much glucose in the bloodstream. These high glucose levels can lead to nerve damage in patients with diabetes. This condition, called diabetic neuropathy, makes it hard or impossible to feel pain in the feet. People who have diabetes are at higher risk for a number of foot conditions or injuries, such as:

  • Bunions, corns and calluses
  • Cuts and sores
  • Ingrown toenails
  • Fungal infections
  • Hammertoes  

Without pain, even small injuries to the foot of someone with diabetes can turn into major issues. Maybe you step on a tack or nail, or your shoe doesn’t fit properly and causes a sore on your toe from rubbing. You don’t feel pain, so you don’t treat it. The injury grows and becomes infected. Diabetes lowers the body’s ability to heal properly, so this infected wound doesn’t get any better. 

Even small injuries to the foot of someone with #diabetes can turn into major issues. via @MedStarWHC

By the time patients notice these sorts of wounds, they’ve often developed into a foot ulcer. Diabetic foot ulcers can involve:

  • Ascending infection, or an infection that spreads up the leg
  • Exposed bone or tendon from the wound
  • Gangrene, or the death of skin and tissue  

Request an appointment with one of our doctors if you have diabetes and you’ve noticed any of these symptoms of diabetic foot ulcers.

Amputation: The worst-case scenario for diabetic foot problems

The average surgeon who sees a patient with a bad diabetic foot ulcer will immediately begin thinking about amputation. Depending on how far the patient’s infection has spread, amputation could involve:

  • A portion of the foot
  • The entire foot
  • The foot plus part of the leg  

Diabetic foot ulcers frequently lead to what’s called a below-knee amputation (also known as a transtibial amputation). A below-knee amputation involves removing the leg at some point along the tibia, one of the two bones that run from the knee to the ankle. This can be a devastating loss for patients. With the loss of that much of the leg, patients have to work much harder to do what they were able to do before their amputation—expending 50 to 125 percent more energy just to maintain their previous activity levels.

In addition, below-knee amputations have been linked with an increased risk of death following the surgery. One study conducted in the Netherlands found that the median survival time after having a below-knee amputation was just 27.8 months—a little more than two years.

Amputation can lead to a sort of vicious cycle for patients. Because it’s harder to walk after an amputation, patients often are less mobile afterward. This can increase the risk of more infections, which can lead to more amputations. More amputations can lead to different prostheses as more of the leg is removed, which can make it harder to walk. It’s a painful series of events we try to avoid for our patients.

How we save diabetic feet

We try to avoid these sorts of problems through limb salvage, or treating diabetic foot ulcers before amputation is necessary. Dr. Attinger and Dr. Steinberg are internationally known experts in the area of limb salvage. More than 1,000 patients per year benefit from their expertise. The Center for Limb Salvage brings together a team of doctors from a variety of medical disciplines, including:

  • Diabetology, or the study of diabetes
  • Plastic surgery 
  • Podiatric (foot) surgery
  • Radiology, or medical imaging
  • Rheumatology, or the study of problems affecting the joints, muscles and bones, as well as the immune system
  • Vascular surgery  

The best case is when we can treat foot problems before surgery is needed. We use a number of advanced treatments to make this possible, including:

  • Braces or orthotics, which can help protect and support the foot and leg
  • Gait evaluation, or a specialized analysis of a patient’s walking pattern to correct problems
  • Hyperbaric oxygen therapy, which can stimulate the body’s natural healing processes

If surgery is needed, we can transplant tissue from other areas of the body to save a patient’s toe, heel, hindfoot or the entire foot. In other words, we can save patients’ feet when other surgeons can’t. This requires advanced microsurgical skill to remove dead or diseased tissue while preserving as much healthy tissue as possible. If tissue transplants aren’t possible, we may be able to use skin substitutes temporarily or permanently to correct wounds. We also may be able to improve blood flow to the foot with vascular surgery, which can promote healing.  

The benefits of limb salvage

Saving the foot increases mobility, which leads to a higher quality of life. When it’s not as hard to walk, you’re much more likely to be active and fit. This means limb salvage can help patients be healthier and live longer.  

On top of all that, limb salvage tends to be less expensive than amputation over the long run. If we can save your foot with one or two surgeries, that’s the end of the surgical process. But if we have to amputate, it tends to start that vicious cycle of developing more infections and needing more amputations. The costs of amputations—in terms of both money and quality of life—can be crushing to patients.  

No one wants a patient to go through the pain and difficulty of an amputation. I’m hopeful that our limb salvage expertise will help more patients stay mobile, active and healthy.