A Good Death

I have had the privilege of caring for many couples through my career, many over a number of years, so I have been a part of their life journey. One of my favorite couples were Marcie and Alfonzo (I do change names so I am not violating any privacy rules). This couple were in their late 80’s when I met them, both with chronic comorbidities (multiple diseases). Marcie had been a smoker for 50 years, so she had Emphysema/COPD (Chronic Obstructive Pulmonary Disease). This is a progressive disease that causes chronic and debilitating shortness of breath. One of the diseases that is often caused by COPD is Heart Failure, which means the heart does not pump effectively and can cause fluid to accumulate in the legs/feet. This also causes shortness of breath. The combination is difficult to manage and can limit the patients quality of life very significantly. Marcie was a feisty, stubborn, full of life tiny woman who could breath fire. I adored her! She was a person who tells it like it is. Due to her disease, she was incredibly thin (the medical world calls it cachexia). Soaking wet, she probably weighed 80lbs. She was always visibly short of breath and had significant swelling to her ankles and feet. She was chronically exhausted and her appetite was diminished. Yet, nothing could keep her from her passion, painting. She went to her studio everyday, no matter how she felt. She continued to make meals, socialize, stayed involved with her daughter and granddaughter, travelled, she was determined to live her life. But, it was becoming increasingly difficult for her to even get into the shower everyday, just tying her shoes caused extreme breathing issues. I was trying to manage her symptoms (there is no permanent fix for either condition), using inhalers, diuretics (pills that make you pee all day), I tried to convince her she needed to conserve her energy, but she didn’t care for that advice. As her disease progressed, I had frequent gentle but realistic conversations about her decline, bringing in her husband and daughter on a regular basis so we were all on the same page. The goal was to make sure Marcie could live her life as fully as possible, and she did make the decision not to go to the hospital if she were to get worse. She continued to live her life as well as she could until she had a significant fall. Elders who fall often have a rapid decline after the event. Honestly, the fall was not catastrophic, but it helped us all realize that Marcie could not safely live at home with her 90 year old frail husband as her caregiver. The hardest part of this couple’s journey was making the decision to move Marcie to the next level of care. They were extraordinarily fortunate in that they resided in a continuing care retirement community (CCRC), where assisted living and skilled nursing wouldn’t cost them any more money. Still, it took an act from God to convince her to make the move. A lot of concessions and promises were made, most importantly, an aide was assigned to take Marcie down to her studio daily, oxygen in tow. She was able to live in Assisted Living with a good quality of life for a number of months thanks to her stubbornness, desire to live, and family support. But, as with all chronic, progressive illnesses, the diseases advanced and symptoms worsened. Because of the ongoing conversations Marcie had with her health care provider (me) and her family, she easily and readily transitioned to hospice care, with comfort and quality of life as the goals. The worst part of shortness of breath is the “air hunger” , which makes someone feel like they are suffocating, which in turn, causes a lot of anxiety and even panic. Morphine, used often in hospice, takes away the air hunger and brings comfort. Incorporating ativan (an antianxiety medication) also adds to relieving the panic from breathing problems. Thanks to the comfort medications and extra care provided by hospice, Marcie lived a number of months, surrounded by friends and family. She was able to get her affairs in order, spend quality time with her husband, inventory her paintings, and come to terms with her mortality. She had the opportunity to express her love for her family repeatedly. Marcie died peacefully, without pain or suffering. She is a shining example of how to die on your own terms with dignity.

The key to a good death is to evaluate what is important to you as you near your inevitable end and to communicate those goals with your family and health care provider. Those conversations are not easy to start or continue once started, the subject makes most people squirrelly. Even most health care providers avoid the subject. Before you get sick is the best time to explore your feelings on the subject. Start with thinking about your previous experiences with death, what is important to you culturally, emotionally, spiritually, physically. These are not fun subjects, but people who are willing to have the conversation and put their plans in place, when the time comes, the parting is eased for both the patient and the family.