Supportive Voice  Vol. 10 No. 2  Spring 2004 

by Mary Ann Mitchell, RN, MSN

Ms. Mitchell, who lives in Georgia, is the owner of Mitchell Medical Billing Services, Inc. The following is reprinted with permission from the M.D. News, Central Savannah River Area.

My husband, Yacht, died at home on November 1, after a long battle with heart disease. For us, this long journey started with chest pains, resulting in a stress test and quadruple bypass surgery in 1984. My husband's denial was evident and it always seemed to serve him well. Never was there, in my opinion, a more Type A personality than that whom the physicians had to deal with during his treatment.

When initial results evidenced the need for bypass surgery, Yacht made his denial obvious when he claimed that the cardiologist went into the wrong room to deliver the results of the first stress test. Following the first bypass at a local hospital, staphlococcus aureus, an epidemiological problem, precipitated another quadruple bypass. This occurred a week later and resulted in a two-month stay in isolation at the hospital. At the time, we felt lucky that his infection was not the pseudomonas also reported at the local hospital at the time.

Two years later, Yacht's xiphoid process was removed when the staph aureus reared its ugly head again. Eight stents after that, we felt that we had "outrun" the heart problem. However, in September 2000 my husband experienced two heart attacks while on a golfing trip with his friends in Myrtle Beach, SC. He hadn't before experienced heart damage; it was always the vessels that supplied blood to the heart that were of any concern. Now, however, he was experiencing something that the doctors could not "fix." He was too old for a heart transplant, something that he even refused to think of at any time during his illness.

After a friend delivered Yacht home one day earlier than expected from the September 2000 golfing trip, he finally consented to go to the hospital. His cardiologist met with me in private, and informed me that my husband would not be going home this time. Yacht blamed his situation on a bad hamburger he had eaten at the golf course in Myrtle Beach, more evidence of his denial. It seems that several of his golfing buddies had experienced gastrointestinal problems during the trip, and they all blamed their discomfort on the hamburgers that they had eaten at one of the golf courses.

We spent Monday through Thursday night in the cardiac care unit (CCU). Friends came from as far away as California and New York to see him. The CCU waiting room was constantly full of our friends, who were trying to lend their support to the patient and our family, all expecting that this was the end. However, refusing as always to be the "average man," Yacht walked out of the hospital on Friday morning and lived an active life—until the next incident, at which time his cardiologist was able to place in him yet another stent to provide more life.

In 2002, when cardiac stents were no longer an option, Yacht was offered an epicardial lead pacemaker, the newest technology in cardiac care. The first of five pacemaker surgeries was performed in December at Crawford Long Hospital at Emory University in Atlanta. Although it wasn't successful, because of his diseased vessels, we tried again in January 2003 to have the pacemaker implanted. It took Yacht several months to recover from this last procedure. Three more surgeries provided him with a pacemaker that finally worked. During the last surgery, an antibiotic was prescribed that caused an allergic reaction in the buccal cavity. He experienced total ulceration to the mouth, gums, and tongue. It took many weeks for his mouth to heal, not something that one would expect from a prescribed antibiotic.

In late August 2002, we took an Alaskan cruise. We had a spectacular time and Yacht shared our trip memories with anyone that would listen. Great friends planned that trip and shared many special moments. Christmas 2002 was quiet, as was our New Year's Eve celebration at West Lake Country Club. Nonetheless, we were there, all the same.

By early 2003 Yacht was spending four hours every Friday having Dobutrex infusions to strengthen his heart. Iron infusions, to increase his hemoglobin, were being administered every Tuesday and Thursday at a local hospital; each of these took three hours to administer. We were doing everything to make his quality of life the best it could possibly be. In February 2003, he was hospitalized and his cardiologist suggested hospice care. I could not fathom that we could not provide to him yet another cardiac procedure to "fix" the situation. A nephrologist to whom Yacht was referred reported that he had 25 percent kidney function at the time. The problem was now not only heart disease, but also kidney disease. No further cardiac procedures were offered.

We went home and "maintained" until Yacht's last hospitalization in May 2003. At that time, he was offered renal dialysis. Four weeks of renal dialysis would ready his system for peritoneal dialysis. Peritoneal dialysis, done each night while he slept, would provide a daily purification of his system of most impurities. Because I am a nurse, I was assured that I could be instructed on how to perform peritoneal dialysis. However, the cardiologist told me that Yacht had refused all that the nephrologist offered.

During that hospitalization, my husband was all but mute. He didn't want to be hospitalized. A living will had been signed several years before. Again, our cardiologist reported that my husband had stated that he never wanted to succumb to such heroic methods as renal dialysis to sustain his life. Being required to have yet another kind of stent being placed in his weakened body, reporting to have renal dialysis several times a week, and undergoing dialysis some four hours at a time until he was ready for peritoneal dialysis—all this was way beyond his definition of "living."

He was discharged from the hospital to hospice care. My friends were summoned to assist me in bringing Yacht home from this last hospitalization. When he arrived home, he became animated and his old self again. Without speaking, he had controlled his destiny one more time.

Hospice had again been offered by our cardiologist at the May 2003 hospitalization. He had diagnosed Yacht's situation as cardiac cachexia. Finally, I realized that hospice and palliative care were our only options. We scheduled a meeting with an intake nurse from St. Joseph Hospice, Augusta, GA; this, I realized, was our new option for a continued life experience. The nurse who came to our home was very professional and understanding of our situation. We had since 1984 fought a long and hard battle and were not yet ready to give up the fight. We developed a treatment plan and my husband was now the center of everyone's thoughts. He would have hated that. He hated to be the center of attention and hated to inconvenience anyone. Nonetheless, he also wanted his passage through this life experience to be conducted at home and with the utmost pride.

A hospice nurse came or called no less than two times each week. If I called the nurses between those times, they were always available. We had been assigned to a team consisting of several registered nurses, a social worker, a chaplain, and an aide. When I called, I would identify which team we were assigned. Never when I called did I not receive a rapid call back to allay my concerns about my husband's condition. The hospice people responded as if he was their only patient at that moment. Every member of the hospice team was supportive of Yacht and his life decisions, as well as supportive of any family members and friends present during their numerous visits. Explanations of the plan of care were available to friends and family at all times.

On June 9, Yacht expressed a need for pain medication. Throughout our entire experience, since the initial bypass surgery in 1984, his pain threshold was a great concern in assessing what we were dealing with. Simply put, Yacht's pain threshold was very high and he would not express pain until it was sometimes detrimental to his condition. When he said that he was in pain, he truly was in pain, and action needed to be taken.

When morphine is prescribed, the patient's fear of becoming addicted to it, or the family's fear that the patient will be "out of it," are the most documented common concerns. Now everyone involved had to ask of themselves, "When there is nothing more that the medical field can do, what is your goal for your loved one? Is your goal to provide a pain-free existence and a loving environment? Or is being awake, but in pain, more important to you?" I called hospice to inquire what could be done to alleviate Yacht's pain. They sent a nurse who administered the first oral morphine dose. Family and friends were in attendance at this initial administration. Explanations were provided, to anyone in attendance, during the initial morphine administration. Still, some family members were adamantly opposed to the medication being given at all.

Yacht had been taking untold numbers of baths since his discharge from the hospital. I was assured that this was the result of the renal failure. His skin felt better with frequent baths. At 4:40 pm, the day after the morphine was first administered and during yet another tub bath, Yacht asked what time it was. He then instructed me to call his friend, Carl, to pick him up to go up to the Yacht Club at the French Market Grille West. Yacht met with his friends every evening, Monday through Friday, from 5 pm to 7 pm at this location. The morphine had given him a "new lease on life." Since his release from the hospital, he had not been able to stand erect, the result of the renal failure. But after the morphine, he was able to walk unaided and enjoyed some two weeks of quality life. I believed that I had my "old Yacht" back. What a grand experience!

Cardiac disease is truly a cruel disease. One day the patient is totally unresponsive; the next day you feel that the patient had been misdiagnosed. We were "living" at our house, not awaiting death! Nonetheless, Yacht's weight was rapidly going down. No one could avoid this fact. He refused any of the nutritional supplements. We were endlessly making him chocolate milkshakes fortified with instant breakfast powder, something that he would ingest.

To be accepted by hospice, a person must be in the last six months of his or her life. In October we were in our fourth month. Yacht expressed a desire to gain all his weight back and regain his previous life. At this point, we had round-the-clock sitters to take care of his every need. The day sitter and I took him to his geriatric internal medicine physician, who assessed his medications and condition. Medications were adjusted, and our plan of action was then to continue to live at the highest quality of life that medical knowledge could provide.

I had to go back to work in September 2003, and when his condition would allow, Yacht would visit my office several times a week. We also took him back to his cardiologist, who put him back on the four-hour Dobutrex infusion after a week, plus Digoxin every other day. To resume the Dobutrex, Yacht had to be discharged from hospice and reassigned to home health care. The hospice nurse came to my office to have me sign the discharge papers. She was very supportive of the decision and stated that she thought that this was the best plan of care. I cannot tell you the number of physician friends who, early on, had visited and told me that Yacht would not live through the night, or that he would have no longer than seven to 10 more days to live. The pacemaker that took five surgeries to implant and regulate was now the only apparatus that was keeping him alive.

Two weeks before his demise, Yacht expressed the desire for a good hamburger. The housekeeper offered to go get him a fast-food hamburger. Nothing doing, Yacht said. He wanted to go to the Rack and Grille and eat inside. He ate one half of the burger and drank two Sprites. Another day that week, he went down to RiverWalk and enjoyed the fountain. The week before he died, he was eating everything that was put in front of him. It seemed that he wanted to live.

I was elated, but a little voice in the back of my head told me that I was now the one in denial. Nonetheless, Yacht was the person in charge. My goal had always been to provide him the best during this life experience. The Wednesday and Thursday prior to his death, I came home from work to find him playing cards with the night sitter. On each of those nights, his smile when he greeted me warmed my heart. Never did I know what I would meet when I got home. He never complained about his plight in life. Yacht was kind to the last minute, something that not all caregivers experience.

At 7:47 pm on November 1, he was pronounced dead by our neighbor, who is a physician. Yacht went quickly. The fight was then ended. He had told me just that week that I should make reservations again for us this year at West Lake for New Year's Eve. He had wanted to live. God, however, had another plan.

Yacht often wondered why, when I described his heart disease, I always referred to it as "our" disease. Every time that he went through any procedure, it was my heart, too, that was being treated. In the end, I think that he understood that a part of my life was ending with his.

He was a great man and he "walked the walk and talked the talk." Furthermore, he lived by example. I have learned many lessons from this man that chose me as his wife. No greater lessons did I learn from him than during those last six months of his life. He was something that you do not hear much of nowadays—he was a good citizen.

To St. Joseph Hospice, thank you for all that you did to increase his quality of life. To all of his physicians, thank you for all that you did to make our life together as long as it was possible. He will be missed by many for a long time. To make life choices and to have these choices honored is an expression of a good life lived. To have the opportunity to die at home is an experience few have. It was my honor and privilege to have provided this for the love of my life. In the end, I was the one in denial. I simply did not want to give up.