End of Life Decisions Are Tougher Than We Think

As an internist and geriatrician I deal with elderly patients all the time. We always end up talking about end of life issues such as “Should I be resuscitated if my heart stops and I stop breathing?”. “Do I want a feeding tube or gastrostomy tube if I stop eating and require nutrition?” “Should I be kept alive on machines and for how long if there is no reasonable hope of recovery?” “When should we refuse tests for diagnosis and subsequent treatments due to frailty, age and quality of life.” These are all immensely difficult decisions for patients and their loved ones. We have documents available such as living wills and medical directives and we appoint health care surrogates to carry out our wishes when we cannot direct care ourselves due to health reasons. Despite this, disagreement often happens between family members and loved ones when the time comes to institute the plans outlined by the incapacitated patient. There are different interpretations of “living”, “terminal condition”, “life prolonging treatment”, etc. Is having a heartbeat and a spontaneous respiration truly living if you cannot eat by mouth, walk to the bathroom, recognize your loved one?

I faced these decisions as a caregiver and co-healthcare surrogate earlier this year and, despite being a professional, felt the decision making was extraordinarily painful and difficult. I share decision making with my brother who lives out of state but will hop on a plane at a moment’s notice to help out. He is an extraordinary son to my chronically ill mom. Widowed a few years back, and suffering from severe and chronic lower extremity issues, she became wheel chair bound and incontinent in the last year. Mom has been living in a highly rated senior facility with its own on-site medical staff in a complex supported by a religious philanthropic organization. Her doctor is a “fellowship trained geriatrician” from an Ivy League institution supported by a team of nurse practitioners. For this reason I decided to interact strictly as her son, not her doctor. Since dad passed away several years ago, she became withdrawn, angry and stopped participating in facility functions. The care team brought in psychiatrists who prescribed medications that left her calmer but clearly hallucinating frequently.

With isolation came increasing cognitive dysfunction with poor decision making and extremely fuzzy thinking. Four months ago she complained to me about having foot pain. I reported it to the nurse rather than undress her and examine her. The LPN reported it to the nurse practitioner. She was seen by a podiatrist several days later and several hours after that visit a nursing aide called my brother in NYC to ask permission to apply betadine (iodine solution) to an infection on her toes. He granted it. Several weeks later while visiting her I smelled decaying flesh. I noticed that when she moved her feet under her sheets she grimaced. I walked over and lifted the sheets and gasped. I was looking at seven gangrenous toes with a blue cool foot and absent pulses in both feet. No one had told my brother or me that mom had vascular insufficiency with gangrenous feet and toes. I called in the nurse and she called the nurse practitioner. The nurse practitioner had no answer as to why no one had told my brother or me that mom had a serious vascular problem going on for months. We had participated in the monthly team telephone conference calls where we listened to social workers, dietitians and therapists discuss her eating habits, socialization and participation. No one discussed gangrene.

Mom had a living will and a State of Florida DNR form. At best she enjoyed holiday trips to my home for family dinners, reading a book and watching TV. Injuries to her hands from repeated falls had made reading a book difficult. Sensitivity about wearing adult diapers and having an accident while visiting my home or out to a restaurant had made those trips a thing of the past. No one at the facility or care team discussed gangrene, evaluation and care for it or the option of palliative care. The Nurse Practitioner said that they hoped the iodine applied to the toes would stem an infection and the bloodless toes would just fall off.

I had numerous discussions with my brother about asking Hospice to intervene and provide comfort measures only at that point. My thinking was colored by my experiences as a resident at a big city hospital where a man with a gangrenous leg chose not to amputate it for religious reasons. We treated his infection but packed his gangrenous leg in ice so the decaying tissue would not rapidly deteriorate and to reduce the horrible odor. I did not want my mother to become that gentleman dying a horrible death, packed in dry ice while caregivers avoided her room due to the horrible odor.

A kind vascular surgeon in the area with excellent credentials offered to see her and offer an opinion. He said that without a diagnostic angiogram he would recommend an amputation above the knee on one side and below the knee on the other. I could not see amputating two legs. Had mom been rational and competent she would not have wanted that. Hospice seemed like the rational decision but that decision required two health care surrogates to reach agreement. “Steve I called her on the phone yesterday and the nurse brought her the phone. We had a wonderful conversation about your nephew and your kids. She seemed with it.” Grandchildren called her and had rational conversations with her. There was resistance to calling in Hospice within the family and their concerns created seeds of doubt in me. I am not blaming my relatives at all. I never stood up to them and strongly said, “She is infirm, with a miserable quality of life and no hope of improvement and you are all crazy for wanting to intervene.” So she went for an angiogram and they opened up three arteries in the right leg and then two on the left. The vascular doctor recommended amputating the gangrenous toes while the circulation was good and creating a clean margin of tissue receiving blood. That procedure took about an hour and was done right after the angiogram. All looked well when I saw her back in her room and snuck in a forbidden corned beef sandwich and kosher pickle. One week later the pain returned to the left foot. It looked dusky and pale. Noninvasive vascular studies showed the arteries that had been opened were now closed. The vascular surgeon recommended above the knee amputation. During this period of time my brother had made multiple trips back and forth from NYC to visit Nana. Our children had flown in from out of town to rally her and support her. They saw her deterioration. They saw her go from recognizing them to confusing them for our wives and her mother and sister. The decision to call Hospice this time met with no family resistance. Hospice arrived as Hurricane Matthew bore down on this area. We went home to prepare our homes for the storm and mom died during it.

Her death clearly relieved her of suffering with a horrible quality of life. That fact is comforting. Losing a mom is an irreplaceable loss. Should I have been more forceful in demanding palliative care earlier? I am still not sure. I am very comfortable with the effort to restore blood circulation to her feet to relieve pain and suffering. I would make that decision again. Other families and clinicians might not have decided that was the best course of action for their loved ones. I will say I had no guidance or help from her medical care team. I think patients and families need guidance at times like these because the choices are not black and white. There is much grey and much pain and many life experiences and emotion coloring your decisions.

I still sit down with my patient’s families and review the end of life options. We talk more about what “living” actually means to their loved ones. The decisions are never easy.

Advertisements

To Floss or Not To Floss? Making Recommendations Without Data

The U.S. Department of Health has announced that there is no data that flossing your gums has any benefit.  This has led to an Associated Press review of the paucity of randomly controlled trials with evidence that flossing is beneficial. The result is a new recommendation that flossing daily is not necessary. We are living in an era where the only justification for research and observational studies seems to be to justify saving money by not teaching patients something or encouraging them not to do something. Cost containment is the key as the US Government tries to lower the percentage of dollars spent on health care as a percentage of the Gross National Product.

Experts at the Cleveland Clinic spurred on by the “Bale and Doneen” philosophy that inflammation in arterial vessels leads to acute heart attacks and strokes have pushed for greater periodontal care and health. Flossing is part of that philosophy. Cleaning in-between your teeth with hand held pics or water pics provides cleaning of the gums and spaces between teeth as well.  There are few or any studies on this subject because the benefit is so obvious that there has been no need to perform them.  Dentists assure me that proper tooth and gum care is essential to your general health and wellbeing.  This is common sense like not crossing a busy street against the light, not drinking alcohol and driving a car or truck or not jumping out of an airplane without a parachute. It’s time for our dental schools to organize and perform these studies but I suggest you keep caring for your gums and teeth while the data is being accumulated.

Telomeres and Healthy Aging. The Tufts Perspective

Telomeres are bits of DNA genetic material that sit atop DNA strands and keep vital genetic material intact when cells divide or replicate. Think of them as the little plastic piece on top of the shoe laces. When they fall off or become damaged the shoelaces get damaged or frayed. Healthier older individuals have longer DNA strands with intact telomeres compared to people with shorter life spans and chronic diseases who have smaller and shorter telomeres. Whether the shorter telomeres are the “chicken or egg” is unclear but clearly those with shorter telomeres are more likely to die from heart disease or infectious processes.

There does seem to be a relationship between telomere size and nutritional and vitamin levels. Ligi Paul Pottenplackel is a researcher at the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts New England Medical Center. She has looked extensively at the humans’ intake and concentration of folate and telomere length and health. She found that those with an exceptionally high folate level and intake have shorter telomeres and worse health. While many researchers believe that folate being water soluble is flushed out if you don’t need it and causes no cumulative toxicity, she believes the short telomeres may be the result of excessive folate intake.

Physical exercise seems to keep telomeres from eroding. In an article in the journal Medicine & Science in Sports and Exercise, researchers showed that telomeres were longer in those who were active. Over time, all participants telomeres shortened but less so in the physically active groups.

While Tufts takes a closer look at nutrition and healthy aging we urge all to stay physically active while eating a balanced diet

Glucosamine and Chondroitin Sulfate Preserves Knee Cartilage in Osteoarthritis

My brother in law is a well-respected researcher and biochemist. Thirty years ago he treated his post exercise aching knees with glucosamine and chondroitin sulfate and felt better. Since then he is a fan. Although he is a firm believer in the scientific method and double blind controlled research studies, we could not find any research to support his observations.   The discussion then turned to, “it helps me and it doesn’t hurt me so why not?”

In a double blind study sponsored by the National Institute of Health known as GAIT, 1500 or more patients with osteoarthritis and a painful knee were randomized to either receive glucosamine and chondroitin sulfate, each substance individually, Celebrex or placebo for six months. The results showed neither led to reduced pain.

Several other studies were as non-conclusive. In the few studies where pain was reduced the study methods and design were criticized and the results were felt to be questionable as were the conclusions of the researchers.   There was nothing positive to say about glucosamine and chondroitin sulfate until a recent study by Martel- Pellitier, Canadian researchers published in Arthritis Care and Research those individuals who took the combination for six years or greater tended to preserve their knee cartilage better than those who did not.  While the knee cartilage was maintained there was no difference in pain or complaints of symptoms between the treated and non- treated group. They believe that by preserving knee cartilage over time there may be less necessity for that joint to be replaced eventually.

I am sure over time this will be studied as well. In the meantime glucosamine and chondroitin sulfate seems to have little toxicity and ultimately my brother in law may be on to something positive.

How Tightly Should We Control Blood Pressure in the Elderly?

A recent publication in a fine peer reviewed medical journal of the SPRINT study proved that lowering our blood pressure to the old target of 120/80 or less led to fewer heart attacks, strokes and kidney failure.  There was no question on what to do with younger people but to lower their blood pressure more aggressively to these levels. Debates arose in the medical community about the ability to lower it that much and would we be able to add enough medication and convince the patients to take it religiously or not to meet these stringent recommendations?

There was less clarity in the baby boomer elderly growing population of men and women who were healthy and over 75 years of age. The thought was that maybe we need to keep their blood pressure a bit higher because we need to continue to perfuse the brain cells of these aging patients.

A study performed in the west coast of the United States using actual brain autopsy material hinted that with aggressive lowering of the blood pressure, patients were exhibiting signs and symptoms of dementia but their ultimate brain biopsies did not support that clinical diagnosis. In fact the brain autopsies suggested that we were not getting enough oxygen and nutrient rich blood to the brain because of aggressive lowering of blood pressure.  Maintain blood pressure higher we were told using a systolic BP of 150 or lower as a target.

A recent study of blood pressure control in the elderly noted that when medications for hypertension were introduced or increased a significant percentage of treated patients experienced a fall within 15 days of the adjustment in blood pressure treatment.  This all served as an introduction to a national meeting on hypertension last week during which the results of this same SPRINT (Systolic Blood Pressure Intervention Trial) strongly came out in favor of intensive lowering of blood pressure to 120/70 to reduce heart attacks, strokes and mortality in the elderly and claimed even in the intensive treated group there were few increased risks.   On further questioning however by reclassifying  adverse events in the SPRINT trial to “ possibly or definitely related to intensive treatment, the risk of injurious falls was higher in the intensive vs conventional treatment group.”

What does this mean in the big picture to all of us?  The big picture remains confusing.  It is clear that lowering your blood pressure aggressively and intensively will reduce the number of heart attacks and strokes and kidney disease of a serious nature.  It is clear as well that any initiation or enhancing of your blood pressure regimen puts you at risk for a fall. You will need to stay especially well hydrated and change positions slowly during this immediate post change in therapy time period if you hope to avoid a fall.  Will more intensive control of your blood pressure at lower levels lead to signs and symptoms of dementia due to poor perfusion of your brain cells?  With the SPRINT study only running for three or more years it is probably too early to tell if the intensive therapy will lead to more cognitive dysfunction.

Antibiotic Associated Colitis Increases Risk

At least a half dozen times per week patient’s call with symptoms of a viral upper respiratory tract infection or present to the office for a visit with symptoms and signs of a cold.  These illnesses are caused by small viral particles which do not respond to antibiotic treatment.   Your body’s defense system attacks these viral particles and over a period of hours to days defeats them.   Despite years of ongoing public health announcements and handouts by doctors and nurses and attempts at patient education you find yourself negotiating with strong willed patients who want a “Z Pack” or some other antibiotic which they do not need.  “I know my body,” they argue.  “My northern or previous physician knew to always give me an antibiotic, why won’t you?”

The answer is quite simple. They do not work to shorten the course, intensity or duration of your illness. They do in fact put you at risk of developing complications of antibiotic use. When your infection requires the use of antibiotics to restore health, it is worth taking these risks. When you do not need the medication it definitely is not. This was confirmed by an article and research presented by E Erik Dubberke, MD of Washington University School of Medicine in Saint Louis, Missouri commenting on Medicare Data about the death rate associated with antibiotic related colitis infections due to Clostridia Difficile.  Bacteria normally reside in our large intestine and promote health and digestion.  When we prescribe an antibiotic it kills off the healthy and beneficial bacteria as well as the infection related bacteria. This destruction of healthy bacteria creates an environment conducive to “opportunistic “bacteria normally suppressed by the normal flora to invade and take over your gut. The resulting fever, cramping, diarrhea with blood occurs as the intestine become inflamed with colitis. One of the common opportunistic pathogens is Clostridia Difficile.

Dr. Dubberke looked at Medicare data and compared 175,000 patients older than 65 years of age and diagnosed with Clostridia difficile infection and compared them to 1.45 million control patients. He found that those with clostridia difficile infection had a 44% increased risk of death. When comparing admissions to nursing homes for treatment there was an 89% increased risk due to antibiotic related colitis care.

Antibiotics are wonderful when appropriate. They will always carry a risk of a side effect, adverse reaction or complication which is a risk worth taking in the correct setting.  It is clearly not worth the risk when your doctor tells you that it will not work.

How Much of Yourself Can You Give to Others?

I have been practicing general internal medicine for over 35 years in the same community. I have many patients who started with me in 1979 and are now in their late eighties to early nineties.  Predictably and sadly they are failing.  Not a week goes by without one or two of them moving from general medical care to palliative care, very often with the involvement of Hospice for end of life care.   Medicare may now compensate for discussion of end of life issues but anyone practicing general internal medicine or family practice has been discussing end of life issues appropriately for years with no compensation. It just comes with the territory.

Most of us still practicing primary care thrive on being able to improve our patient’s quality of life and our major compensation can be hearing about their interactions and social engagements with family and friends.  It is an accomplishment to see you’re 90 year old with multisystem disease for years, dance at her great grandchild’s wedding.  No one who cares for patients longitudinally for years is that dispassionate that they do not give up a piece of their heart and soul each time they lose a patient or have one take a turn for the worse.   When I lose a patient, if time permits, I will attend the funeral or family grieving gathering during the mourning period.  Everyone gets a personal hand written letter. Completion of the circle of life and then moving on is part of the process.

I think physicians’ families take the brunt of this caring and I am sure mine does. As much as you want to have time and patience and sympathy and empathy for your loved ones, the work truly drains your tank and reserve. When you answer the questions of the elderly and their families over and over, often the same questions, it drains you.  Unfortunately, I believe my elderly failing mother is cheated the most by this process. Last weekend when making my weekly visit she was complaining again about the same things, asking the same questions that have repeatedly and compassionately been addressed by my brother and I. My wife interjected that I sounded angry and annoyed. I was. I told her that unfortunately all the compassion and understanding in me had been drained already today and I needed time to recharge.

I saw the widow of a patient who expired last month in his nineties. I had offered to make home visits and they were declined several times by the patient and his spouse. His last week of life he asked to receive Hospice care and they assumed his care.  I called the surviving spouse and wrote what I considered a personal letter of condolence.  His wife told me she was disappointed in me for not coming up to see him one last time. I apologized for not meeting their needs but wondered inwardly, how much can I give and still have something left for myself and my loved ones?