Illness and suffering

Illness, pain, suffering and the value of life

By Ron L.P. Berghmans

Maastricht University
Faculty of Health, Medicine and Life Sciences
Department of Health, Ethics and Society
PO Box 616
6200 MD Maastricht
The Netherlands
r.berghmans@hes.unimaas.nl


December 6, 2009


Introduction
As discussed in the chapter on decisions at the end of life, ethical issues related to end-of-life care concern philosophical questions about the goal(s) of medicine, and the place of pain, suffering and the value and meaning of life of the patient. The story of my illness experience and recovery as a cancer patient, on which the following is based, contains three parts; the first encompasses the period from complaint to final diagnosis (October 2003-July 2004); the second the period of treatment, recovery, relapse, and repeated and more intense treatment and recovery (July 2004-April 2006). The third is the one from ‘definite’ recovery until the present time. In that period I suffered a stroke from which I recovered quickly and with only slight residual effects.

My personal story of illness, pain, and suffering and the corresponding experience of life’s meaning and value started in the autumn of 2003. At that time the chronic back pain which I experienced in the lower parts of my back was increasing. As this was different from normal – I had been used to chronic back pain for a great part of my life -, late in October I turned to my general practitioner. She diagnosed the back pain as ‘functional’ and ‘non-specific’ and prescribed pain-killers. Her advise was not to work too hard… As the pain kept increasing, after a few weeks I returned to the general practitioner. Now she prescribed different pain killers which had as little effect as the previous ones. As my condition worsened, I had a third consultation during which I expressed my wish to have X-rays of my back. Only very reluctantly and after much pressure my GP agreed to refer me to a radiologist in the academic hospital. X-rays of my lower back showed no real and serious anomalies, although there was some minor pathology at the vertebrae. It appeared that my GP was content to have these particularities as possible (probable) causes of my pain. Nevertheless, my situation kept worsening as there was no therapy available to better my condition.
After consultations with different other medical professionals finally – it was July 2004, so more than half a year after the first consultation with the GP – an assistant neurosurgeon decided to scan the whole of my back with MRI. On the basis of this scan it appeared that there was a process to be seen halfway my spinal cord. After taking a biopsy it was concluded that I suffered from malign B-cell non-Hodgkin lymphoma and that it was localized in the abdomen and the bone marrow. This last detail explained the seriousness of the pain I suffered.


The shock of a fatal diagnosis
It is often said that a cancer diagnosis is experienced as a ‘death sentence’ by the people involved. The patient’s life is at stake, and although therapeutic prospects in many cancers have improved – particularly in case of non-Hodgkin lymphoma - for most people the prospect of premature death will be the first thought when a cancer diagnosis is communicated. The knowledge of a cancer diagnosis implies that the patient and his family and friends need to relate to this new and mostly unexpected fact. One cannot escape the need to give a place to the illness and the future prospects regarding treatment (if applicable) and premature death.
Becoming aware of the real significance and potential impact of the diagnosis of Non-Hodgkin lymphoma certainly was not something which happened immediately after it became clear that there was something seriously wrong in my body. Additional diagnostic procedures were in some way a distraction from what really was the case, as if as such these procedures already improved my future prospects. So the ‘shock’ of a fatal diagnosis was not really a shock, but something which evolved in the diagnostic process and during treatment. In my opinion this phenomenon affects bioethical and legal notions of informed consent and refusal of treatment, as these notions are tightly connected to communicative aspects during the illness course, as well as psychological, social, and cultural factors which relate to defense mechanisms, distortion of information, and cultural habits and values.

Hope
Some claim that hope is the crucial factor in the care for patients with cancer. Hope involves the prospect that in the future there will be cure, or at least a prospect of a life with an acceptable quality for the patient. During the different treatments I have undergone – chemotherapy, radiation therapy, and autologous stem-cell transplantation, I have experienced a lot of support from the idea that at the end of the tunnel there would be the light of a successful treatment, even though I was aware that this chance was real, but definitely not a guarantee. Above that I granted myself the outlook that I would have the luck to belog to the statistical group of patients who would survive the lymphoma (about 50% of all sufferers). This promoted the fighting spirit and gave strength during difficult times.


Isolation
In case of severe illness (together with burdensome medical treatments like chemotherapy and radiation) the patient becomes more and more involved with and focused on the illness and the treatments. In my case, the experience of intense and enduring pain isolates the person from his surroundings. The physical environment has little or no meaning and personal contact becomes difficult, as the person is almost exclusively involved with and focused on the pain he experiences. This introversion increases the vulnerability of the patient who has difficulty in expressing his or her needs and wishes; this implies a need for carers to be sensitive to the unexpressed needs the patient may have. An illustration in my experience were the pressure sores at my back which had gone undetected for a while.


Contemplating wishes in advance
As it became clear that my illness might progress in such a way that my life would end during or after treatment, I decided that it would be helpful to draft an advance directive stating my medical wishes in case I might become unconscious or otherwise incompetent. When drafting the advance directive together with my wife we discovered that it was not easy to formulate in an exact and unambiguous way my wishes regarding end-of-life treatment and care. It was particularly hard to delineate care which would be acceptable, and care which would not be acceptable. In drafting an advance directive, one first needs to be conscious of the values which lie at the basis of your concerns about care at the end of life. On the basis of these values it becomes possible to give practical guidance to carers and relatives. In any case, I learned that debating my wishes with my wife gave me the confidence that in case I became incompetent and decisions ought to be made, then my wife would be in a good position to act as my representative on the basis of my personal values and wishes. It seems to me that the involvement of a person who is close to the patient can provide much better and more valuable input into the process of medical (and ethical) decision-making at the end of life than any formal advance document. At the same time I am aware that this is the ideal case in which there is a formal advance directive together with a person who has knowledge of the concerns and wishes of the patient.


Hopelesness
My experience with severe pain is largely connected to the pre-diagnosis period (October 2003-July 2004). Central in this period has been the continuous back pain which ‘coloured’ my existence and that of my family and friends.
As the pain became unbearable, the rehabilitation physician who was in charge of my physical condition would give an injection with corticosteroids. The effects thereof were really miraculous. The first time, within two hours the pain was completely gone and kept away for six weeks. This gave me and my family the opportunity to spend ten happy days in Tuscany. However, each next injection had less effect, and after 4 or 5 injections the pain kept away for less than 24 hours. The rehabilitation physician discussed the issue and explained that he thought it was useless to continue the use of corticosteroids. I could not do other than agree, there was no choice.
Less than a week later – as my condition kept growing worse - the situation became unbearable. The pain was continuously intense and I saw no prospect of relief whatsoever. As there was no use in administering corticosteroids, I contemplated suicide as an escape from this terrible lot. After a sleepless night – I remember it was early on a Saturday morning – I called the rehabilitation physician. In my mind, I had made the decision that if he was not be willing to inject me once more with corticosteroids, I would jump from the local bridge into the river.

Confusion and broken communication
Next to the pain during the pre-diagnosis period, there was the pain which accompanied the medical procedures – particularly the intensive chemotherapy which was followed by autologous stem-cell transplantation - I received morphine by injection. This pain-killer was continuously infused by a syringe driver, and briefly after the start of this I became seriously confused. This confusion encompassed different experiences.
The first experience was one of hallucinating. These were partly visual, and partly what I would call experiential. The visual experience involved distortions of visual perception: when I looked out of the hospital window, I saw dancing construction cranes.
The second experience involved what may be called ‘broken communication’. This was very frightening. As I had difficulty expressing myself, I was unable to clarify my wishes, but particularly my concerns to others. An example was my conviction that time had been fixed.
The third experience involved unclearness about place and time. Particularly at night I was disturbed about my environment. I didn’t exactly know where I was, and why I was where I was staying. Besides that, I didn’t know the time or date, let’s say the coordinates of my existence in time. As already mentioned, there has been a period in which I experienced time as being fixed. This was particularly embarrassing as I thought that this eternal fixation of time would imply that I would have to stay in the hospital without end. This was extremely frightening as I was eager to leave hospital as quickly as possible.
In particular the experience of broken communication was extremely frightening, as I could not get my worries and fears across to the people who were caring for me: nurses and doctors. Only my wife was sensitive enough and able to see that my mental condition was worrisome. Her intervention led to a reduction of the morphine dose, which resulted in a passing of the side effects.


Unbearable suffering
The notion of ‘unbearable suffering’ is difficult to assess.
In a recent publication, motivations of patients with a request for euthanasia or physician-assisted suicide were explored on the basis of 10 patient-centered, qualitative studies (Dees et al., 2009). This exploration “showed that patients express their unbearable and unrelieved suffering in terms of pain, weakness, functional impairment, dependency, being a burden, hopelessness, indignity, intellectual deterioration, perception of loss of oneself, loss of autonomy, and being tired of life.”

The authors of this article conclude that “the point where suffering becomes unbearable is a very individual perception that is closely related to the personality, the life history, social factors, and existential motivations.” Irreversible disintegration and humiliation of the person appeared to be the start of openly exploring the phenomenology of death. The circumstances of their illness brought all the patients to the point where they would rather die than continue to live under the conditions imposed by their illness.

The unbearability of suffering can be explored from two viewpoints: the viewpoint and experience of the suffering person, and the viewpoint of ‘bystanders’, including physicians and other health care workers. From the patient’s perspective and subjective point of view, when pain and/or suffering is or becomes unbearable is less difficult to assess than from the viewpoint and perspective of the bystander. This simply is the case because the former experiences her suffering directly – as the subject of experiences – while the latter can only indirectly try to ‘get a picture’ of the suffering. As he or she does not experience the other person’s suffering, essentially he or she has limited access to the experience of suffering of the other person.
On the basis of my personal experience, I very much agree with the abovementioned authors in regard to the ‘very individual perception’ of the unbearability of suffering. In the end in my case it was the total disintegration of myself which took place during the period that the cancer process was attacking my spinal chord, which so long went unrecognized by the medical community and led to much unnecessary suffering for myself and distress for those around me.


Value and meaning of life
The value of life is connected to the individual experience of the person and to the meaning he or she can attach to objects, living creatures (including animals), and activities in the world. Increasing isolation diminishes the value and experience of life’s meaning. The loss of meaning in connection with extreme pain and suffering led in my case to suicidal ideation. In case of loss of hope this was the only ‘exit’ out of an unbearable situation.
Giving value and meaning to life depends on the possibility to have experiences and attach meaning to these experiences. Painful experiences are not necessarily meaningless or valueless. This at least partly depends on the broader context of spiritual and (non-)religious world views which people may adhere to. However, serious suffering without reasonable hope of relief deserves compassionate attention and in exceptional cases the moral obligation to relieve this suffering may lead to a decision to actively terminate the life of the sufferer.


In conclusion: suffering and the goal(s) of medicine
I have experienced suffering which I then and now consider(ed) unbearable. Leaving aside the fact that the medical assistance was far from optimal (to say the least), the experience of pain and suffering has taught me a lot about the goals as well as the limits of medicine (and health care more broadly). As far as the limits are concerned I am convinced that not all pain and suffering can be controlled in ways which are acceptable to the individual patient concerned. I think my experience with the morphine syringe driver has taught me that pain control can have a high price by way of serious side effects. When suffering becomes unbearable there is a great need for comfort and compassion. Feelings of isolation, of not being recognized as a person and of not being heard by health care workers may lead to feelings of despair and abandonment.
As regards the goals of medicine, when cure or relief of pain are unattainable goals of medical practice, then the relief of suffering becomes the primary goal of medical assistance. Ultimately, compassion ought to be the guiding moral compass in cases of extreme, unbearable and hopeless suffering. The sufferer may find consolation in the recognition of the suffering by others, including professional healthcare workers. Compassion in interminable and unremediable suffering may demand an active intervention of the physician.

The most important aspect I learned from my illness experience with a fatal medical condition is how crucial attentiveness and open and careful communication with the patient is. Being seen and heard and being recognized as an individual who is in serious need is far more important than being informed about statistics regarding prognosis and chances of survival. Authentic presence, and the expression of one’s own humanity, insecurity, doubt and fear by professional carers acknowledge at the same time that life is precarious and vulnerable, and that hope and fear go together hand in hand.


Reference
Dees, M., Vernooij-Dassen, M., Dekkers, W. & Van Weel, C., Unbearable suffering of patients with a request for euthanasia or physician-assisted suicide: an integrative review. Psycho-Oncology, 2009: DOI: 10.1002/pon.1612