Every hospice, including AseraCare Hospice, purposes to help every one of its patients face their death with dignity. Hospice websites are filled with expressions like “dying with dignity” and “living to the end with dignity”. But what does “dignity” mean? What was Maria telling me and how could I help her?
According to the Oxford English Dictionary, dignity means “the quality of being honorable or worthy; true worth, excellence”. In other words, dignity consists of those qualities or characteristics that make us feel we are valuable or worthy. Perhaps Maria was simply saying, “Dr. Avery, I don’t feel I am valuable anymore”. And who could argue with her? Looking at things on the surface, Maria was no longer the supportive enthusiastic wife, the tennis player with a great serve, the hard-working loving mother, and the efficient businesswoman that she was only six months ago. Had Maria lost her dignity — her value? To answer this question, we must divide this concept called dignity into two categories — “attributed dignity” and “intrinsic dignity”.
Attributed dignity is the value or worth that is given to us from others or from oneself. Because it is given to us by others or by oneself, attributed dignity can be taken away or lost. Examples are our appearance, prestige, income, abilities, productivity, possessions, or even our control over a situation. In Maria’s case, she used to feel valued because of her luxuriant hair, her abilities in tennis, her roles as a mother and businesswoman, and simply in her ability to walk to the bathroom unaided. Her advancing breast cancer was taking a terrible toll upon her by robbing her of these things.
I was visiting a young female patient with end-stage breast cancer at her—home. I’ll call her Maria. She was thin, emaciated, and weak — limited to her bed and the bedside commode, which was two steps away. Her previously long brunette hair was gone, as were the strong athletic legs and arms that had characterized her years as a college tennis player. “I’ve lost my dignity, Dr. Avery,” she sobbed, “I never thought it would happen to me…but I’ve lost my dignity.”
The stark reality for all of us to keep in mind is that Maria’s situation, though sad, is not a rare situation — all of us will die someday. Terminal diseases and even aging relentlessly tear down many of those characteristics and qualities that have constituted our attributed dignity. The dying person often loses their hair and job. She becomes weaker and cannot enjoy simple activities — even walking to the mailbox may become impossible. He loses weight and his clothes become ill-fitting and awkward. Friends may avoid him. Families may become condescending and controlling. Her independence is lost. She suffers in numerous losses of modesty and control at medical facilities. Sometimes he will need help eating and drinking. She may even need help going to the bathroom and with bathing. Influence, power, and control slip away.
Despite heroic efforts to resist, terminal diseases wield a sharp ax and take out huge chunks of our extrinsic dignities. Of course, some people suffer more of these indignities during the dying process than others. But the truth is simple; all of us will die and most of us will face the sharp metal of the ax at the trunk of our dignity.
When we fully embrace and acknowledge the harsh realities of the human journey, I can almost understand why the “Death with Dignity Act” is the name of the law in Oregon that legalized physician-assisted suicide. I assume the supporters of this ill-conceived law are saying that we should let a person out of “the life contract” when there are too many attributed dignity losses. But there is a better way – hospice is the dignified answer to this reality of lost dignities. And that leads us to the second type of dignity — intrinsic dignity.
The Role of AseraCare Hospice
Having been a hospice physician and taken the final journey with countless patients and families, I know that dying inevitably raises questions about one’s worth and value. At AseraCare Hospice our goal is to help people deal with these very real issues. That is why every patient in AseraCare Hospice gets a visit from a nurse, a master’s degree counselor/social worker, and a chaplain. The hospice team works hard to help mitigate the extrinsic dignity losses of a dying patient and their family. We do this by helping to control pain and other symptoms, by honoring patient choices, by assisting patients and families with their social and emotional losses. At the same time, we try to bolster the patient’s sense of their own intrinsic dignity by validating, reinforcing, and demonstrating that they have value and worth and are deserving of honor in our eyes.
I have found that the process usually goes something like this. As the extrinsic dignities fade (as they inevitably will for everyone), certain questions naturally arise. If we lose our hair from chemotherapy – are we more than a pretty face?
If we lose the ability to work — are we more than our occupation? If we lose the ability to generate an income — do we lose our value to our family? If we lose the ability to walk and toilet — are we a burden to our family?
These questions will often lead to further questions: Is this all that there is? What is life about? Does my life have value? Will anyone remember me? If there is an intrinsic value to my life, what is the source of this value? Can such a belief be validated? All of these final questions, even if not asked or addressed in a religious framework, are spiritual. That is why everyone on AseraCare Hospice is offered and encouraged to receive a visit from a chaplain and why all members of the hospice team are knowledgeable about and address spiritual pains.
Cicely Saunders, the founder of the modern hospice movement, said, “Soul pain is reached and healed by the way care is carried out.” As we tenderly dress the bedsore of a patient with Alzheimer’s or gently help change the bedsheets in a patient with cancer or patiently listen to a sad and lonely widow tell the story of her life — we are affirming and validating the value and dignity of that person. When a health care professional, like a nurse or a physician or social worker, pray with a patient, he or she is confirming that the patient is more than a disease — more than a simple collection of cells and atoms.
When Maria, our breast cancer patient from the beginning of this article, cried saying that she had lost her dignity, I told her, “Maria, you can never lose the dignity that is within you — it is something that can never be extinguished”. Then, the hospice team reinforced this truth to her by carefully treating her pain and nausea, by helping her husband and children cope, by listening to the hopes and dreams she had for her children, by giving her tender loving care, by praying with her at her bedside — by simply valuing and honoring her as a member of the human family.
One aspect of granting dignity is allowing an individual to make his or her own choices and determine his or her own life journey. Some patients may elect to not grapple with the questions listed above and that’s OK. For example, a hospice patient may refuse a visit from our hospice chaplains. Some patients may believe that there is no intrinsic value to human life. At AseraCare Hospice, we respect patient autonomy and will go on the journey to the end with the patient respecting and honoring their choices.
At AseraCare Hospice our goal is to help all of our patients and their families find value and dignity and to live each remaining day of their lives with meaning and purpose.
If you are interested in reading more about these concepts of dignity, please consider reading any number of books by Dr. Daniel Sulmasy or learn more about The Center for Bioethics and Human Dignity here. I am indebted to him for much of the content of this post.