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 Since dad passed away several years ago, she became withdrawn, angry and stopped participating in facility functions.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

Dying Should Not Be So Brutal

End of LifeIn an Op-Ed article in the NY Times, Ira Byock, MD, correctly details how brutal dying from a terminal disease is in this country. He cites the tragic case of a friend who fails to respond to conventional therapy for oncologic disease at a well-known Center of Excellence and the suffering he is going through. With conventional therapy failing he is offered a chance to enter a clinical trial or experiment to save his life. The author recommends Hospice care instead but if the patient chooses Hospice care he will be forced to forsake entering the clinical trial and turn his care over to the Hospice team. The author believes this is wrong and the patient should be able to receive comfort care and palliative care while still treating his disease. He goes on to make a list of sane recommendations regarding the future training of doctors and nurses so that patients and their loved ones will have the opportunity to be better informed about end of life issues.

I became exposed to Hospice in the late 1970’s early 1980’s when the Hospice movement consisted of caring angels of mercy , who at no cost to the patient or family provided comfort measures to the patient and support and counseling to the family. Hospice of Boca Raton met in a store front on Spanish River Boulevard off Federal Highway. It was staffed by volunteers from local churches, off duty paramedics, nurses, and community volunteers. They needed a medical director so I was asked to participate as part of a rotating group of physicians who donated our time to this worthy cause. Volunteers took a training course and devoted countless hours to providing bedside care and comfort to the sick and dying.

As one of the volunteer medical directors I attended care team meetings, reviewed care plans and signed for the prescription medications and narcotics needed to care for our patients. My time commitment was very structured and limited compared to the long hours the volunteer staff invested in providing comfort measures. We were paid nothing, expected nothing and worked with the patient, their loved ones and their doctors tailoring a care plan that fit each individual’s needs. We did not make them stop their treatments. We did not make them transfer their care to Hospice and away from their long time care team. In those days patients actually had a personal physician who knew them for years.

We were thanked and loved for our limited time investment far in excess to our contribution especially compared to those wonderful volunteers who performed the daily bedside and household care. This all changed when insurance and Medicare agreed to finance Hospice. At first we all thought the extra funding would now make it possible to provide service to many more individuals and pay for badly needed supplies and medications.

The first thing that happened is that many of the volunteers were dismissed and replaced with full time help. That included the volunteer physician medical directors. Medicare wanted full time people. Hospice became a business run by profit making corporations, hiring per diem help to go into homes instead of full time well trained Hospice staff. To be a patient in Hospice you were asked to relinquish your current doctor and medical care and transfer your care completely to the paid full time Hospice teams. In many cases patients were taken off their routine medications and over-medicated with narcotics producing a legal “Kevorkian-like” result even if the conditions did not dictate this approach. It became a big business, not a center for comfort and caring.

Dr. Byock’s article in the NY Times should be required reading for all families and persons over age 50. His suggestions should be discussed in our places of worship, places of education and especially in our medical school and nursing school curriculums. Dying from a painful incurable disease in America should not be this hard and brutal.

End of Life Issues and Family Disagreement

End of LifeI treat a fair number of elderly patients over many years who are now cognitively impaired and in the last stages of their life. Most of the times they live independently in their homes or apartments with the assistance of an aide while their children and closest relatives live elsewhere. End of life issues and discussions are an integral part of my practice in this group of patients. Having a living will and or a medical directive, appointing a health care surrogate for the future and discussing resuscitation status are complex but necessary discussions to have. I try to have these discussions with the patient and their life partner while they are still competent and cognitively intact. I try and review it with the designated health care surrogate if and when their mental status deteriorates. In most cases, when the clinical situation is appropriate for instituting palliative care or hospice care , and the patient when cognitively intact had indicated that this is the direction they wanted to go under these circumstances, these same families have tremendous difficulty in moving forward and following their loved ones plans. It is almost always the absentee children care takers of the Baby Boomer generation , who are now the health care surrogates, who will not institute their loved ones wishes and insist on continuing aggressive and acute care when expected changes in their loved ones health occur. There is always great discord within their families resulting in difficulty knowing who actually is calling the shots especially when all the children have a power of attorney document.

This situation is not unique to my practice. I am interviewed by potential new patients to join my practice all the time. Not a week goes by without a parade marching in of an elderly cognitively impaired patient, their aide, their child or children and sometimes a minimally impaired elderly life partner. The story is usually the same. Mom or Dad has been seeing “Dr. X” for so many years but he has them on too many medicines. They are lethargic. They do not want to socialize. In many cases the children have actually stopped medications based on their internet research, without discussing it with the doctor first. They are looking to change doctors. In most of these cases when I research the patient’s care and records, they have seen a board certified neurologist and geriatric psychiatrist and the diagnosis of cognitive impairment is accurate and appropriate. In most cases the trial of medications is appropriate as well and the care has been superb. In many cases the patient has an end of life terminal disease with a life expectancy less than a year whether it be a malignancy or not. The absentee children just are not able to accept that mom and dad are at the end of the life cycle and have asked for palliative and end of life care. I am sure that the children of some of my patients are seeking care elsewhere as well because they are not ready to accept an end of life diagnosis. This rarely if ever occurs with patients who live with their loved ones who provide hands on care on a daily basis. These hands on caregivers see the deterioration of their loved ones quality of life, understand what is occurring and how their loved one wished to be cared for in this situation.

We talk about death with dignity and living with a high quality of life. No physician or loved one wishes to accelerate the demise of a patient or family member. It is however; very difficult to honor the patient’s wishes when their absentee baby boomer children are not on the same page with their wishes and have not addressed the issues with mom and dad while they are competent and able to do so.