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 Since dad passed away several years ago, she became withdrawn, angry and stopped participating in facility functions.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

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