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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 Since dad passed away several years ago, she became withdrawn, angry and stopped participating in facility functions.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.


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?


Changes Coming to Medicare Soon

CMS (Center for Medicare Services) is determined to eliminate fee for service medicine. Fee for service medicine is the system where patients see a physician or “provider” for a visit or service and the “physician or provider” bills the patient or Medicare for each service provided.  CMS argues that “providers” are seeing too much volume and providing too many services thus driving up the cost of health care and the percentage of the Gross National Product that healthcare consumes.  To contain costs they have come up with the public relations mantra of the “Triple Aim.”  The triple aim includes improving the global health of the US population while improving quality and reducing overall costs.  The true emphasis is on reducing overall costs!

To reach their goals, CMS is changing the way it pays for health care and services. By 2019, less than three years from now, CMS hopes to pay one flat fee per beneficiary to large health care organizations ( think HMOs) thus fixing their costs. That large organization will then be responsible for providing total care to a local population.   Hospitals and large health care systems have been purchasing physician practices and employing the doctors in organizations known as Accountable Care Organizations (ACO’s). These health systems believe that by employing the doctors they will control their ordering and spending habits and reduce costs to the overall system. They hope to drive an aging private community physician population into early retirement or at least to stop coming to the hospitals to care for their own patients. They still want these patients to come to their hospital for care but want their employed physicians to provide the care.

If you look around the community you will notice that the major hematologic and oncology groups are now owned by Boca Raton Regional Hospital, as is the major surgical group, several cardiology groups and a host of internists and family practitioners.  The hospital has additionally partnered with its contracted emergency room physicians to open numerous walk in clinics in young population centers to capture that business. At the same time that our local regional hospital is purchasing practices and discouraging local private physicians from continuing to practice, they have introduced a residency training program in internal medicine and surgery. By the fall of 2017 we can expect 100 internal medicine physicians and up to 45 surgical physicians fresh out of medical school and beginning their training, to be serving as a cheap physician labor force for Boca Regional Hospital.  The hope is that ultimately, the Charles Schmidt College of Medicine at FAU will attract and develop a clinical faculty worthy of a university and academic medical center that will enhance medical care in our area but until then we will always wonder, as anesthesia puts us to sleep, who actually is performing our surgical procedures?   Additionally one wonders if you become ill with a serious illness, will you be permitted and covered to see the best physician at the best institution for your problem or will you be required to stay in a narrow network of local providers contracted with the local health entity?

If physicians choose not to join a large health system organization as an employee they will be required to be part of a merit based payment system.  Government administrators, employers and private insurers are certain they can define and quantitate “quality care.”  It is unclear whether there is any meaningful evidence of what “quality care” really is.   Quality care will include parameters like patient satisfaction ( if you are not given an antibiotic for your viral illness or a narcotic pain medicine for your injury appropriately based on the illness or injury will the provider be given a low patient satisfaction grade?), did you counsel an obese patient to lose weight?  Did you counsel a tobacco smoker to stop?  Did you intervene to control a patient’s blood pressure?  All the data entry will require the physician to spend time in front of the computer screen checking more boxes and less time in face-to-face patient care.  Computers will need to communicate with each other from the office to the hospital to the lab etc. but it is unclear who will pay for this? At the end of each year the doctors will be required to send all their patient care data electronically to CMS for review.

Many physicians will choose to just leave or “opt out” of the Medicare system. They will contract privately with patients and be able to order tests and studies at approved institutions but they will not be reimbursed by Medicare for their services nor will the patient be reimbursed by Medicare for the cost of those doctors’ visits and services.  In most areas of the country where the population is not overwhelmingly composed of senior citizens 65 years of age or older, doctors have stopped seeing Medicare patients for just this reason. This may become the norm rather than the exception in South Florida as well.

For the moment my concierge practice is not changing anything. We continue to participate in all the CMS quality programs such as Meaningful Use and PQRS , vaccine registry and Eforcse (a controlled substance prescribing data base) despite the cost and time involved just to leave our future options open. I remain committed to giving my patients longer quality visits and following them where possible into the hospital when they need hospital services. As patients and citizens it is urgent that you become familiar with what CMS and the Federal Government are doing with your taxes and health care options and hold them accountable to your wishes!  If you have questions about this give me a call or set up a special time to discuss this face-to face.


Increased Dementia Risk in Senior Citizens Due to Proton Pump Inhibitors (PPIs)

Brittany Haenisch, PhD of the German Center for Neurodegenerative Diseases in Bonn, has reported in JAMA Neurology, a study from health insurance data suggesting that taking Proton Pump Inhibitors (PPIs) such as Aciphex (omeprazole), Protonix (pantoprazole), Nexium (esomeprazole), and Prevacid (lansoprazole), was associated with a markedly increased risk of developing dementia. The correlation was stronger in men than women with a slightly increased risk for those taking Nexium.

The study, conducted from 2004 through 2011, looked at 73,679 people age 75 years or older and who were free of dementia at “baseline”.  It revealed 29,510 patients (40%) developed dementia and, of these, almost 3,000 (average age of 84) were taking a PPI medication. The authors concluded that avoiding PPIs may prevent dementia.

All of these medicines are now freely sold over the counter not requiring a prescription. Their use has dramatically increased. There is belief from animal studies that PPIs cross the blood brain barrier and effect the production of amyloid and tau protein associated with dementia. In humans, B12 levels can be lowered effecting cognitive ability. None of this data shows a clear cause and effect relationship so we cannot say PPIs hasten the onset or cause dementia. Newer well designed controlled and blinded studies will be needed for this purpose.

In the interim, I will ask my patients to reduce or avoid these medications. We can treat heartburn and indigestion with products such as antacids, weight loss, eating smaller portions and staying upright after those meals, loosening your belt at the waist and avoiding those foods that reduce lower esophageal sphincter muscle pressure leading to reflux.

There will be some with conditions such as Barret’s Esophagus, which is precancerous, and recent bleeding ulcers which require the use of PPIs for eight or more weeks and then switch to Tums, Rolaids, Gaviscon or Carafate. Some patients will need the PPIs for symptom relief beyond eight weeks and they will need to make a tough decision between symptom relief and increased dementia risk while the researchers search for the answer.


Vitamin D in Senior Citizens: How Much is Enough?

Vitamin D levels are the most popular blood test being billed to CMS Medicare and private insurers. The World Health Organization considers 20 ng/ml to be a normal level of 25-hydroxyvitamin D which contrasts with 30ng/ml in the USA. Vitamin D is made by the kidney when our limbs get exposed to sufficient sun light. It is low in severe and chronic states. Supplementing Vitamin D does not improve the illness except possibly in multiple sclerosis but can return the serum level to normal.

Experts in fall prevention hoped that supplying adequate vitamin D will preserve muscle function and reduce falling. About one in three elderly experience a fall annually with one fracture per five falls. In the USA this amounts to 250,000 hospital admissions for hip fracture each year. The research hope was that by raising the Vitamin D level to 30 we would reduce falls and fractures.  Unfortunately individuals 70 years or older who took 2000IU of Vitamin D a day or 60,000units per month, had more falls and a higher risk of falls than seniors who had lower serum levels and less supplementation. Their muscle function improved with higher dose vitamin D but so did the falls.

The Institute of Medicine, an independent US advisory panel advises taking 800 IU per day or 24,000 IU per month with a goal of a serum level of 21-30 and less frequent Vitamin D level monitoring.