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The Concept of Dignity, Suffering, and Pain in Frail Old Patients and Persons with Dementia
Stein B. Husebø and Bettina S. Husebø
“A medical revolution has extended the lives of our elder citizens without providing the dignity and security those later years deserve.”
(John F. Kennedy, 1960)
In most developed countries most of the population will reach an age of 80 years or more. In their final frail years before death, they will increasingly need support of care services, and be more or less dependent on others. What are their needs? How can we establish and provide optimal care, security, pain, and symptom assessment and management? How can we identify and relieve suffering? How can we respect their dignity and relieve their suffering and pain in their final years before death ? This chapter will discuss the concepts and practical challenges of dignity, suffering and pain, both for the multiprofessional team, and for the frail old and their next of kin.
United Nations Universal Declaration of Human Rights 1948 stated, “All human beings are born free and equal in dignity and rights,” (www.humanrights.com). We also find the concept of and duty to protect dignity implemented in the basic laws and judicial decisions in many legal systems, as well as in international covenants and declarations on human rights. But no country has gone so far as Germany in integrating dignity in its legal system. As stated in the first sentences of the Basic Law (Grundgesetz, www.bundestag.de), the inviolable dignity of human being is a fundamental constitutional principle: “Human dignity is inviolable. To respect it and protect it is the duty of all state power. The German people therefore acknowledge inviolable and inalienable human rights as the basic of every community, of peace and justice of the world .” But, what is the meaning and content of dignity? Dignity as an idea has a long and important history in ethics, not denoted to a single essence. A central statement to dignity comes from Immanuel Kant, “In the kingdom of ends everything has either a price or a dignity. What has a price can be replaced by something equivalent; what on the other side is raised above all prices and therefore admits of no equivalent, has a dignity .”
Human dignity is complex, ambiguous, and multivalent, challenging us to look at the use of ideas in order to probe the depth of their meaning. On the one side all human beings have their inviolable, intrinsic dignity. On the other side their dignity can be violated or confirmed by others. Moody argues for the need to address, discuss, and understand basic words, specific ideas, and challenges of dignity in each specific patient, such as  follows:
Whether by stroke, by dementia, by other severe or chronic disease, by loss of close relatives, by poverty, or by pain, we stand at risk of losing everything achieved over a lifetime. Each of us, however, dimly, carries this unspoken awareness during our lives. Life can end badly, filled with pain and suffering; fear of aging is rooted in this understanding.
Dignity in old age matters because every one of us carries this sense of future vulnerability and because we fear becoming dependent burdens to ourselves and others in our last stages of life. Contemporary debates about euthanasia, concern over mistreatment of the frail elderly, anxiety for isolation, pain and suffering, all revolve around a primal fare: loss of dignity in old age [10, 34].
Pain, suffering, and dignity are closely linked to each other, demonstrated by the research and publications of the psychologist H. Chochinov who provides practical guidelines for “dignity therapy” in end-of-life care, primarily with focus on cancer patients . Recently, his model was tested on older persons in nursing homes [12, 13], also on patients with cognitive impairment , providing courage for practical dignity interventions in long-term care.
DIGNITY—WITH LACK OF AUTONOMY
Most philosophers connect dignity with autonomy. Max Frisch (1911–1991) probably has the shortest version: “Dignity means the freedom to choose” .
Among publications with regard to quality in long-term care, one of the earliest, Home Life introduces the principles of care as “Residents have a fundamental right to self-determination and individuality”—that is autonomy . Although, most centers for elderly care have procedures in place to exercise choice, on information, or services provided and how to complain, only a few provide the opportunities to comment on policy and procedures, planned changes, and suggested treatment and care . This is even more concerning in patients with dementia or without a supportive relative.
For the large and rapidly increasing number of patients with dementia, there will be a decline of autonomy. Their dependency on the choices of others will increase. Their ability to self-report diminishes. They lose ability to claim their human rights. They still have their basic, intrinsic dignity, but now dependent on the respectful and wise choices of care givers, based on their insight, attitude, and competence. Our approach caring for these patients with lack of autonomy must have main focus on “seeing” the individual with his/her biography and life project: which goals, preferences, and decisions will the patient have, and would have had, for the rest of their life? Respecting dignity, All care givers should be aware of the patient’s biography, also including the patient’s life project: which goals, preferences, and decisions will the patient have, and would have had, for the rest of their life?
A nurse’s statement illustrates how vulnerable dignity and autonomy at old age can be: “If I suffer from dementia, no longer able to make competent decisions and somebody remove my breast holder, without reflection if I would have liked my breast holder to be removed, I would kill them. . .”
Nora, 92 years old, patient in our nursing home, expressed her view on dignity: “Well, they give me a pill to stop me from crying, because my husband died. . .”
The appeal to dignity, more strongly the insistent claim to dignity, points to something in us which is genuinely transcendent, something which reflects our freedom to call into question all social roles, to say out loud that I am something more than my frailty or my role performances or my buying power. At that moment, the passive witness rises up to say, “You can’t treat me that way.” The moment we speak these words, dialogue becomes possible and advocacy becomes inevitable. The outcome of this struggle is never certain, but this struggle for dignity emerges again and again through the course of history. It is a cry for justice as much as an affirmation of meaning.
In a remarkable article in New England Journal of Medicine 1982, Cassell  discusses the question of suffering and its relation to organic illness, which has rarely been addressed in the medical literature before. His article offers a description of the nature and causes of suffering in patients undergoing medical treatment. A distinction based on clinical observations is made between suffering and physical distress. “Suffering is experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity. Suffering can include physical pain but is by no means limited to it. The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians’ failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.”
THE CONCEPT OF PAIN
The concept of pain also needs to be addressed. In IASP (International Association for Study of Pain, www.iasp-pain.org) taxonomy, we find the following definition:
“Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”
Merskey and Bodguk  note that “the inability to communicate verbally does not negate the possibility that an individual is experiencing pain and is in need of appropriate pain-relieving treatment. Pain is always subjective. Each individual learns the application of the word through experiences related to injury in early life. It is unquestionably a sensation in a part or parts of the body, but it is also always unpleasant and therefore also an emotional experience. Many people report pain in the absence of tissue damage or any likely pathophysiological cause; usually this happens for psychological reasons. There is usually no way to distinguish their experience from that due to tissue damage if we take the subjective report. If they regard their experience as pain, and if they report it in the same ways as pain caused by tissue damage, it should be accepted as pain. This definition avoids tying pain to the stimulus. Activity induced in the nociceptor and a nociceptive pathway by a noxious stimulus is not pain, which is always a psychological state, even though we may well appreciate that pain most often has a proximate physical cause.” Interestingly, in most articles, lectures, and clinical settings on pain, only the first part of this definition is presented and addressed, overlooking the very important included “Notes on Usage” as the second part, concluding with “Activity induced in the nociceptor and a nociceptive pathway by a noxious stimulus is not pain, which is always a psychological state.”