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Making decisions for Mom.

Updated: Sep 24, 2022

I admitted Mrs. N to the hospital a couple of days before Mother's Day and discharged her to home hospice care just before Memorial Day. The 3 weeks in between were one of the most difficult hospital courses I've had in a long time, not just because of her severe valvular heart disease impacting every organ system in her body but also because of the logistics of dealing with her adoring husband and 12 grown children and their need to be involved in mom's care; in the middle of our second Omicron surge.

All of the children had to take time off work, come into town to visit mom, and slowly come to grips with her impending mortality so we could all agree on a plan of care for her. I was such a coward that I couldn't bring myself to discuss her resuscitation status with her tearful daughter the day before Mother's day. But sooner or later, we had to address the 3 levels of the medical care we needed to give or withhold when an elderly patient reaches a certain stage of life: Resuscitation, Treatments, and Nutrition.

Not everyone will need to deal with all three decisions but it was helpful to discuss this beforehand in case patients have strong feelings either way that may help the family in deciding what to do. Though this process is heartbreakingly familiar to me, it is new and bewildering to most people. It is also becoming more relevant to so many of us who are struggling to care for elderly parents or starting to ponder some of these issues in our own health. So I thought we could all learn something to hear about Mrs. N's story. I will go a little bit more into the medical details this time because some of my readers have written about wanting to learn more about the medical system and process.

Mrs. N is a 91-year-old tiny little woman with a soft speaking voice that belies her solid will and opinion. If you raised your eyebrow at her 12 children, she will not hesitate to qualify that number with the 3 miscarriages she suffered along the way, making it 15 pregnancies that she had to deal with. She was well-read and expressed her opinion clearly on the political and social topics of the day. It was not uncommon for her to sweetly ask me to vote for this candidate or that in most elections. Like most patients, she was so vibrant and strong that throughout all the time that I've known her, there was never any doubt that her code status and treatment status and nutrition status has always been full code, full treatment, full nutrition.

She must have caught strep throat or scarlet fever sometime in her childhood before penicillin became widely available after World War II. A rare complication of untreated strep A infection that we don't see much anymore is rheumatic fever, much like long Covid or some of the post- covid syndrome we are seeing now, that can gradually and progressively affect the heart and joints for weeks, months, years and decades after the infection.

At any rate, I started seeing her about 20 years ago after her first stroke. In the course of working up the causes of her stroke, we found that all 4 of the valves in her heart were scarred, stiff, and malfunctioning, causing blood to regurgitate backward upon the contraction of the heart's chambers. The most significant of the valvular damages was the mitral valve which progressed eventually to valvular congestive heart failure; so she was referred to UCLA for mitral valve replacement with a pig's valve a few years later.

Unlike most congestive heart failure in America today, which is caused by multiple heart attacks from clogged arteries feeding the heart (ischemic CHF), her CHF was caused by valve malfunction causing more blood to be pumped back to the lungs than forward to the body. Due to the narrow valves causing poor blood flow, she was placed on Warfarin after surgery to prevent further clots from forming inside her 4 chambers and causing strokes in her brain. Even now, after the invention of Plavix, Pradaxa, Eliquis, and Xarelto, the only blood thinner that works for this severe heart condition is Warfarin. The effect of warfarin on the coagulation systems fluctuates depending on the amount of vitamin K in our diet. Vitamin K is present mostly in green leafy vegetables, so warfarin efficacy varies a lot depending on the season and the produce that people eat throughout the year. This meant that I have to see Mrs. N every month to check her prothrombin time and adjust her warfarin dosages accordingly. We also have to deal with occasional bleeding episodes throughout the 17 years since her valve replacement. We were well aware that a porcine valve replacement usually lasts about 10-15 years so we were not surprised when she started showing symptoms of heart failure from mitral valve stenosis again 2 years ago.

Throughout the past 2 years of the pandemic, we've had to reduce our frequency of blood tests to almost every 2-3 months due to the shutdown and lack of available personnel to do home lab draws. She became progressively weaker and more swollen from retained fluids despite our attempts at outpatient treatments. Her children became alarmed when she stopped talking or eating and called 911 to bring her into the hospital.

In the hospital, the echocardiogram or doppler ultrasound of the heart showed that her mitral valve was barely opening or closing, it was also only about 1cm in opening diameter, allowing very little blood to pass from the left atrium into the left ventricle. The blood pressure inside her lungs had risen astronomically, and her lungs had filled up with fluid, both inside the blood vessels and out in the pleural spaces. The CT scan showed an engorged liver and swollen intestines. Her lower extremities showed severe edema/ fluid retention. This is called anasarca, when there is fluid back up all over the body. The pulmonary and cardiology consultants and I set about removing fluids slowly by drawing them out from the lungs via pleuracentesis, and by adjusting her diuretics gently, limited by her very low blood pressure.

Mrs. N. was not able to speak much more than one breathless syllable at a time. She was so tired that she slept most of the time, barely opening her eyes when I talk to her. She was too weak to sit up to eat or cough and could not maintain her oxygenation without high flow oxygen by nasal cannula or mask. We were able to request permission for family members to take turns staying with her 24 hours a day but they were unable to get her to eat more than a bite or two a day. We started her on IV partial parenteral nutrition because total parenteral nutrition would have required a central line to be placed into the vena cava and because a procedure to place feeding tubes into the stomach or into the nose would have been too aggressive and painful.

It seems that the family was divided on how aggressively we should treat Mrs. N. Even though it was clear that the only cure would have been another heart valve replacement, and even though everyone agreed that she is not a surgical candidate at her age and in her condition, not everyone had the same outlook and expectations. Most of her sons were more realistic and stressed the quality of life over quantity. They were in favor of putting her in hospice care, making her as comfortable as possible, and allowing her to pass away in peace. On the other hand, most of her daughters and her husband were still holding out hope that once we removed the fluids out of her body she would wake up and eat and talk and cough again. They were in favor of palliative care which means continuing to treat with the goal of prolonging her life, but only using the means that she is comfortable with.

The typical POLST form (Physician Order for Life-Sustaining Treatments) that we review with patients about end-of-life care consists of 4 sections. The first is Resuscitation, the second is Medical Treatments, the third is Nutrition and the last is Information and Signatures.

In the second section, the difference between Selective treatment and Comfort-Focused treatments is essentially palliative versus hospice care, where we change our focus of medical treatment from prolonging life to relieving pain and suffering. In palliative care, we stop the preventive treatments like warfarin, atorvastatin, etc... The patient's medication list will be trimmed down to the bare minimum. In hospice care, we stop blood draw, IV fluids, IV nutrition, antibiotics, hospitalizations, etc... Only focus on giving the oxygen and medications that may help keep the patient comfortable and at peace.

After 3 weeks of diuresis and treatments, Mrs. N.'s lungs continued to look worse on chest x-ray but she was stable on oxygen and was able to be discharged to home on palliative or hospice care. While her sons kept asking for us to take out the catheter and IV lines when she goes home, her daughters kept asking for artificial nutrition to be continued and for her to be sent home on IV medications and IV nutrition. Her husband even beseeched me to keep her alive for another year. Although it was confusing that she had multiple children and grandchildren keeping watch around her bed at all times, Mrs. N did have one daughter who has been assigned to make all decisions on her behalf. I was able to work primarily with the designated daughter and opted to send the patient home with hospice care on a trial period of artificial nutrition and IV meds. If by some miracle, she continues to improve and is able to sit up and eat and take oral meds, then we may stop the hospice care. If she continues to decline or is unable to recover, then we may stop the IV treatments and allow her to pass away in peace when her daughter and family are ready to let her go.

Thus the POLST form serves as a guideline for us to follow but it is not made of stone and is quite fluid. We can and often do change the level of care when there is a change in the patient's clinical status that warrants an evaluation of these orders. It is more important that everyone in the family agrees with the plan of care or at least has had a chance to think about it.

I am so thankful that this Memorial Day, I can pay homage to the soldiers who have given their lives for this country instead of paying homage to my patients who have died in the war against Covid. My list of the fallen victims of the pandemic this year is so much smaller than last year. Although even now, one of my favorite Filipina mama is in the ICU with Covid pneumonia. So it appears that we have not beaten this disease but will have to learn to live with it, like strep throat, TB, and hepatitis.

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