The Funeralocity Manifesto
Ongoing debate continues internationally over the issue of withdrawal from life-prolonging treatment and the perceived parallel to suicide or murder. High profile cases like that of Vincent Lambert in France or Tafida Raqueeb in England stimulate controversy and stir the emotions of the public. While individuals and communities are passionately arguing their personal and ethical positions over these cases, in the United States alone there are more than 15 million people living with cancer and 500,000 people with a diagnosis of end stage renal disease receiving dialysis treatments. This article will explore the multifaceted dilemma of withdrawal from life-prolonging treatment using case examples of patients suffering from cancer or end-stage renal disease, the specific needs of patients and their families, and how hospice professionals can facilitate a peaceful death.
The National Cancer Institute stated, “In 2018, an estimated 1,735,350 new cases of cancer will be diagnosed in the United States and 609,640 people will die from the disease.” Advancements in chemotherapy as well as the management of side effects from cancer treatment are made each year. Surgical procedures to remove tumors have improved with benefits of higher success rates and shorter recover periods. Combinations of treatments continue, such as chemotherapy and radiation with successive long-term medication regimes. Despite increasing options for treatment, including the availability of clinical trials, death will still be the end result for millions of Americans suffering from cancer.
The decision to withdraw from treatment is impacted by religion, family values, levels of pain and discomfort, finances, quality of life, and availability of emotional support.
“As long as the patient has been given all the relevant information about his or her treatment options and knows the risks and benefits of each option, including the risks and benefits of turning down treatment, the patient’s wishes come first.”
The Vermont Ethics Network
But what about the wishes of the family? A patient will often delay the decision to withdraw from treatment in order to protect loved ones from facing their own grief.
DeeDee, a married 45-year-old woman with twin 10-year-old girls had been battling breast cancer for 3 years. She received cutting edge care at the best cancer hospital in Boston and demanded every treatment available in order to live to see her daughters grow up. DeeDee’s husband, Andre, was also a fighter, pushing DeeDee to continue treatment even after mastectomy, chemotherapy, and radiation had failed. During an oncology visit following a CT scan, DeeDee received the news that the cancer had metastasized to her bones. DeeDee was educated on the next clinic trial available but was warned that the possibility of slowing disease progression was slim. This was a turning point for DeeDee.
Once a productive worker and an involved mother with energy to spare, DeeDee was now unable to care for her children and had missed her daughters’ last season of basketball. Lethargic, fighting nausea both day and night, bald, and feeling broken, DeeDee made the decision to stop treatment. Andre, unable to imagine life without her and unsure of his ability to parent the girls alone, became inconsolable and angry. DeeDee did not back down and, in fact, had been considering withdrawal for months. They returned home and together shared the decision with their daughters. A hospice intake was arranged for the next day.
The hospice social worker accompanied the nurse to the home due to the severity of DeeDee’s condition and the fact that she was a young mother. While Andre drove to gather the girls from school, DeeDee chose to confide in the hospice team. The copays for her medications, out-of-pocket expenses, and deductibles were placing a heavy burden on their finances. Andre insisted on using their daughters’ college savings. They were behind on their mortgage payments and risked losing their house. Without hope for a recovery, DeeDee would not allow her children to suffer any longer. DeeDee continued to cry as she told the hospice team that Andre had not touched her sexually since her mastectomy two years ago.
When the children and Andre returned home, the nurse thoughtfully reviewed her findings and outlined what to expect in the next days and weeks. Using her knowledge of breast cancer, the nurse validated the information the oncologist provided and assured the family that although DeeDee may be out of curative treatment options, comfort measures were still available. The social worker asked to speak with Andre alone and allowed him to share his disappointment over DeeDee’s decision, his fears for his daughters, and his anguish at the thought of losing his wife. Using active listening, normalization, and anticipatory grief support, the social worker was able to help Andre accept his wife’s decision and be available to his children in the following weeks.
During the intake visit, the daughters were not willing or able to share their feelings with their parents or the hospice team. The social worker’s second visit was productive.
It was revealed that the girls had started to distance themselves from their mother when she began losing her hair. Frightened by their mother’s weight loss and pained presentation and increasing awareness of her inability to keep up with their school work and activities, they began to lean on their best friend’s mother. Additionally, the hospice chaplain made weekly visits to the family. With patience, encouragement, and creativity, the girls gradually felt connected to their mother again. DeeDee died during week 7 of her hospice engagement, in her own bed surrounded by her family. Andre did not seek bereavement support but arranged for his daughters to see the school adjustment counselor. The support received from the hospice team allowed DeeDee to die peacefully and the family to cope effectively with their loss.
Dialysis as a treatment for end-stage kidney disease consists of cleaning and removing fluid from the blood, the responsibility of functioning kidneys. There are three types of dialysis available: 1) hemodialysis 3 times per week for 3-4 hours per treatment, 2) peritoneal dialysis conducted at home 7 days per week for 8-10 hours per day, and 3) home hemodialysis conducted 5 out of 7 days per week, without two days off in a row, typically 3-4 hours each time. For some, dialysis can be a temporary solution until kidney transplantation can be achieved, but the current waiting time for a deceased donor kidney is 5-6 years, or 780, 1820, or 1300 treatments respectively. Moreover, the typical dialysis patient has an overwhelming pill burden—an average of 19 pills per day. Oftentimes, patients have multiple comorbid conditions which make dialysis more difficult to endure. Quality of life, work, finances, independence, and family time are greatly affected by life on dialysis. Patients are also faced with pressure from family members and friends to continue treatment.
“It may not be beneficial to prolong life with dialysis if the quality of life suffers dramatically. Prolonging life with dialysis may actually be prolonging the dying process for some patients, which is usually not desirable.”
Morrow
For patients ineligible for kidney transplant, the idea of life on dialysis is daunting and depressing.
“Discontinuing dialysis should never be considered in patients who can continue to lead a long and enjoyable life. If, however, a patient has kidney failure as a result of diabetes, has also gone blind, sustained double below-the-knee amputations of his legs, and is confined to his bed between trips to the dialysis clinic, he may question whether continuing dialysis is right for him.”
Morrow
When Julio made the decision to withdraw from dialysis, he was entering his 5th year of clinic-based hemodialysis every Monday, Wednesday, and Friday for 4 hours per treatment. Julio, a 68-year-old married man with children and grandchildren had been praying that his name would come to the top of the transplant list and that he would receive a kidney. A new diagnosis of colon cancer shattered his dreams. When added to diabetes and restless leg syndrome, dialysis became too difficult to endure. With the support of his nephrologist and dialysis team, Julio had a series of difficult conversations with his family and requested a hospice referral.
Julio asked to see the hospice chaplain immediately to share his guilt over “giving up” and to talk about his fear of not going to heaven. It was important to Julio that the hospice team understood what his life was like on dialysis, and how it affected his day-to-day functioning. The hospice social worker offered family meetings to help his adult children understand and cope and made a referral to massage therapy to ease Julio’s pain and anxiety. The hospice nurse excelled in partnering with Julio’s wife to teach her how to manage his symptoms and medications. Slowly, the family came to accept and admire Julio’s bravery and strength and were grateful to enjoy and support him over his last 4 weeks.
Groundbreaking treatments, the development of new medications, the availability of extraordinary medical facilities, and the hope that if one can hold on, a cure might be discovered increases the burden on those living with serious illness and receiving life-prolonging interventions. Contemplating the emotional process of withdrawal from treatment can seem disheartening until the consequences of the treatment become unbearable.
“Many people are afraid that stopping treatment is equivalent to giving up hope. Stopping treatment does not mean that you are letting go of hope. Instead, it means honoring your hope to spend quality time with your family and be more comfortable in the days you have left.”
Eldridge
References
Cancer Statistics. (2018, April 27). National Cancer Institute. Retrieved from https://www.cancer.gov/about-cancer/understanding/statistics
Medical Ethics. (2019). Right to Refuse Treatment. Vermont Ethics Network. Retrieved from https://vtethicsnetwork.org/medical-ethics/right-to-refuse-treatment
Morrow, Angela. (2019, June 28). Making the Decision to Stop Dialysis. Verywell Health.
Eldridge, Lynne. (2019, September 11). Deciding When You Should Stop Cancer Treatment. Verywell Health. Retrieved from https://www.verywellhealth.com/when-should-you-stop-cancer-treatment-2249017