In the realm of medical science, few advancements have been as transformative and life changing as tissue donation. Yet, despite its potential to save lives and improve the quality of life for countless individuals, opinions surrounding tissue donation have often been mired in emotions ranging from contempt to anger and misconceptions.
In end-of-life care, funeral directors occupy a unique position, offering solace and support to grieving families during their darkest moments. For some funeral directors, the concept of tissue donation may elicit feelings of frustration or resistance, stemming from concerns about logistical challenges and ethical dilemmas. While many funeral directors support and facilitate tissue donation as part of their commitment to honoring the wishes of the deceased and their families, there may be instances where funeral service professionals’ express reservations or concerns about the process. Understanding the perspectives of those who may not be a proponent of tissue donation requires examination of numerous factors that influence their stance.
At the heart of funeral directors' initial reservations lie a multitude of factors, including logistical complexities, ethical considerations, and deeply held beliefs about the sanctity of human remains. For some, the prospect of navigating the intricacies of tissue donation alongside traditional funeral practices may feel disheartening. Additionally, concerns about the impact of tissue donation on funeral arrangements, such as scheduling conflicts or alterations to embalming procedures may have fueled that apprehension. Funeral directors may contend with ethical dilemmas and personal convictions. Some may question the ethical implications of recovering tissue from the deceased person’s body or harbor concerns about the commodification of human remains. Others may simply feel uncomfortable with the idea of caring for decedents for purposes other than traditional funeral services. These deeply held beliefs can shape attitudes towards tissue donation, leading some to express opposition or reluctance.
Navigating the ethical dimensions of donation requires insight and conscious consideration. Respect for autonomy, informed consent and equitable distribution of donated tissues are paramount. Furthermore, addressing disparities in access to transplantation services and ensuring cultural sensitivity are essential aspects of fostering trust within diverse communities. By upholding ethical standards, honest communication practices, and promoting transparency throughout the donation process, recovery agencies can cultivate a culture of trust and accountability.
Sometimes, the most powerful catalysts for change can emerge from individual experiences, such as in my personal experience. Funeral directors who have witnessed first-hand the profound impact of tissue donation on the lives of recipients and their families may undergo a progressive shift in perspective. From facilitating the final wishes of donors to seeing the transformative power of donated tissues in restoring health and vitality, these experiences serve as gentle reminders of the interconnectedness of life and the legacy of generosity. Which is some of what a funeral director does – they help to share the interconnectedness of life and honor the legacy of a life lived.
I graduated from mortuary school in 2001. In the beginning of my career, I had not always been an advocate for donation. I had cared for individuals who became donors and was frustrated with donation. I did not understand the donation process, or why I was seeing what I was following the recovery. I was newer to funeral service and needed to learn how I would care for each one of the individuals who had become a donor. On a personal level, it felt as if funeral service professionals had not been considered in the donation process, while we were the professionals caring for the people who were donors. I had limited knowledge of techniques and products which would be beneficial to the donor’s care. Then my perspective changed, but it took time for me to come to this decision. My own experience with donation and seeing the benefits of tissue recovery helped me understand its importance.
My mother Penny was a beautiful person in every single aspect of the word. She was my inspiration for pursuing higher education; having earned two master’s degrees herself and was in process of working on a doctorate at the time of her death. She was an advocate for underserved communities and populations; having volunteered countless hours over her lifetime to raise funds for community programs, children’s activities, and more. Penny became a mentor to many through her volunteer directorship of a local educational program. There are so many other things to share who and what she was that it is impossible to encompass them all in written words. Mostly, she was dedicated to her family. Penny was a mother to three children, and spouse to her husband, Mike. Her kind and caring demeanor echoed in all things she graced with her attention.
Penny started to become ill at the age of fifty-three after having developed a bacterial bronchitis infection. An uncomfortable cough, sore throat, and wheezing were her main symptoms and those which many people contract every year. She was placed on oral steroids and an antibiotic to remedy her infection, which are common treatment protocols for this illness. She started to rebound and feel better, then began to taper off the steroids and the illness flared again. This cycle happened several times before she was referred to a specialist. Penny received a diagnosis of Bronchiolitis Obliterans Organizing Pneumonia, BOOP for short. What normally would have been a two-week to a two-month prolonged illness - progressed on for five years. FIVE YEARS! That is 1,825 days that she struggled to breathe. For Penny, this illness resembled something between Cystic Fibrosis and Pneumonia blended into one illness. As a result of this yo-yo illness, she was forced to medically retire from her career in health care administration, was oxygen dependent 24 hours a day, became wheelchair dependent, and eventually developed kidney failure from the medications she was placed upon to help her to breathe. This once fiercely independent, incredibly strong woman had become a mere shadow of her former self which took a toll on all aspects of her daily life.
Just when we, as her family, thought this could not get worse for her, it did. As a result of the long-term oral steroids that she relied on to breathe, her bone integrity weakened significantly. Penny developed five stress fractures in her spine and was in constant pain from these fractures. Now, as funeral service professionals, we learn anatomy and have the understanding that the spine is central to all our body’s movement. If we sleep wrong and needed to transfer a decedent back to the care of the funeral home, this could be challenging for us and cause discomfort. My remarkable mother could not sit, nor stand; she could not lay down, nor be in any position for too long a period without being in pain. If she coughed, yawned, had a deep breath or sigh, this would cause immense pain. Seeing someone you love, someone so strong - being in a vulnerable state, and in constant pain; you would do anything in your power to help. She had limited options available and was referred on to yet another specialist.
When Penny finally was able to see the orthopedist, she had these fractures in her spine for three months. They were not healing, and she was in constant agony. A choice given by the orthopedist was to receive donor bone. As I had cared for individuals who were donors, I thought I knew everything I needed to know about donation and how bone was recovered. I told my mom that I knew where it came from, and she should not have the procedure. She was in pain, nothing else was helping and seeing her in this constant state left our family feeling completely helpless. This was her last possibility and she decided to undergo the procedure. The bone that was transplanted was in the form of putty. It had been transformed from the original bone recovered from a donor. The bone putty was injected into the areas of the stress fractures to aid her bones in remodeling. We were skeptical to say the least.
Approximately three weeks later, my mom was able to stand and walk twelve feet using a walker by herself. This was the first time she was able to do this in months! She was healing and was not only feeling better physically, but the ramifications of this medical treatment were positively affecting her mentally too. Her loss of independence was difficult, not being able to perform basic tasks alone. This donor bone was changing that. While it may not have been a life-saving organ such as a heart, or lung, this donor bone saved my mom’s life. From this gift she received healing; a new-found sense of purpose, and no longer felt like a burden. It changed her life. A stranger or stranger’s family made a completely altruistic decision to help someone in ways that may not be completely ever known to them. My mom was one of the benefactors of this profound and life changing decision.
My mom’s spine did continue to heal and as a result her remaining time on earth was mostly pain free. She gained some independence back because of the transplant of donor bone. It improved the quality of her life in ways that cannot be measured. She died on March 9, 2011, at home surrounded by us from complications of her long-term illness. While we wanted her to be with us so much longer, we were so grateful for the healing she sustained because of the unknown donor who had given her a gift that no one else could have given. Knowing what this anonymous person had done to help a stranger, how could I not change my perspective? Indeed, I did, and now I am an advocate of donation.
This is not to say that the donation process is perfect, nor are all donation agencies. There are amazing organizations and there are some that need improvement in working with funeral service professionals. Having worked in the role of a funeral service liaison at an organ procurement agency previously, I have had the opportunity to connect with funeral service professionals across the country and know this from a first-hand account. In many instances, recovery organizations want to work closely with funeral homes to coordinate the donation process while respecting the wishes of the donor and their family. Alternative methods of preservation, such as refrigeration, may be employed to support the integrity of the decedent before tissue recovery takes place. Additionally, funeral arrangements can be tailored to accommodate the donation process, allowing families to honor their loved one's legacy while supporting the gift of tissue donation.
By fostering open communication and understanding, funeral directors can navigate the complexities of tissue donation with compassion and respect. Through this collaborative approach, we as funeral service professionals, can honor the selfless act of tissue donation while providing comfort and closure to those who have lost a loved one. By supporting tissue donation as a meaningful extension of their role in honoring the wishes of the deceased and their families, funeral directors can serve as advocates for compassion, empathy, and generosity. Through their commitment to helping meaningful end-of-life experiences, funeral directors play a pivotal role in advancing a culture where tissue donation is not only accepted but celebrated as a profound act of altruism.
Addressing the concerns of funeral directors who are against tissue donation requires sensitivity, education, and open dialogue. Efforts to increase awareness about the benefits of tissue donation, providing education in preparation techniques for donors, and respectful communication between tissue recovery organizations and funeral homes can help bridge the gap and promote collaboration in honoring the wishes of donors and their families. By fostering mutual understanding and respect, we can work towards ensuring that donation and funeral service coexist harmoniously, serving the needs of grieving families and those who care for their loved ones.
As we continue to navigate the evolving landscape of tissue donation, it is essential to recognize the progress we have made and the challenges that lie ahead. By promoting open conversation, furthering education, and prioritizing ethical considerations, we can build bridges between recovery organizations and funeral homes. This is essential in creating a collaborative approach to donation and honoring lives.
Kelley Romanowski, CFSP, CTBS
Beautifully written, heartfelt piece.