My father passed away at the age of 47 from lung cancer. It all happened very fast: the period from the first diagnosis to his death lasted only a month. The tumor was too big, with metastasis spread throughout his body. Despite his condition, they performed surgery on him. I later found out that this was done so that we, his family, would not be tormented by feelings of guilt.
The process of post-surgery rehabilitation, which never neared completion, was excruciating: my father suffered greatly. One week before his death, when the metastasis had already spread to the vertebra, they started chemotherapy, again just for the sake of keeping the family from feeling guilty. My father was suffering again and was no longer able to walk.
He was a smoker. Of course, smoking was forbidden in the hospital. One time, he asked me to bring him a cigarette. I remember we were sitting in his room, he was smoking and we were speaking about my future. My father was calm. When my grandmother found out that I had given him a cigarette, she was very angry. After he passed away, she told me: “I was wrong to get angry at a child, you were right.”
My father wanted to go home, they didn’t allow him. My father wanted to speak about his fear of death, they silenced him by saying that he would be cured. My father wanted to have me next to him, they made me go away, saying I was a child. What helped us was my persistence, which appeared from out of the blue at seventeen. We talked and I held his hand tightly. We said his last prayer together and then he told me “Go, let me rest.” Dad passed away three hours later.
My story is in no way unique. Stories like this happen every day. Every day, families make huge efforts trying to do everything possible. Every day, doctors try to save what is no longer possible to save, every day patients remain unheard. Every day, all of us, we live with pain and feelings of guilt.
Dame Cicely Saunders, the founder of the modern palliative movement, once said: “Suffering is only intolerable when nobody cares.” But, in addition to the desire to help, it is important to understand how to help. Family members who invest all possible resources, physicians who perform difficult interventions, relatives who try to keep the mood positive all the time – they are all doing their best to give care, but they don’t know how. Palliative care aims to show this “how.”
The World Health Organization defines palliative care as an approach that improves the quality of life of patients (adults and children) and their families who are facing issues caused by life-threatening illnesses. It prevents or relieves suffering through early identification and accurate assessment and treatment of pain and other problems – physical, psychosocial and spiritual. To clarify, palliative care aims to improve quality of life when curative treatment is no longer viable. This brings us to a totally new dimension, when we are fighting not to “save a life,” but for a “life with dignity.”
But what does it mean to “live with dignity?” Let us discuss several points included in the framework of palliative care.
Palliative care aims to improve quality of life when curative treatment is no longer viable. This brings us to a totally new dimension, when we are fighting not to “save a life,” but for a “life with dignity.”
Autonomy
According to the RA Law on Medical Care and Services of the Population, each person has the right to receive accessible information about their state of health, examination results, diagnosis and methods of treatment, associated risks, possible medical interventions, as well as outcomes and results of the treatment. At the same time, no person is to be provided with information about the state of a patient’s health without the patient’s permission. Except for cases prescribed by law, the patient’s consent is obligatory.
However, the moral code of our “family-centered” society dictates totally different rules. The first visit to the doctor usually happens without the patient. The family often predetermines the extent of information given to the patient, the family discusses the treatment process and interventions with the doctor. In fact, the illness takes away from the person not only their health, but also the opportunity to make independent decisions, the right to manage their own life. The family tries to protect the patient from all concerns, but ends up “protecting” them from the opportunity to live fully.
In contrast to this, one of the core principles of palliative care is autonomy and what we call the “individual approach,” the meaning of which we often forget. Severe illness often transforms the patient’s needs and capacities, but these are “their individual” needs. Palliative care is built based on the needs of this specific individual, as opposed to the needs of the “average patient.”
Being Free From Suffering
One of the main revolutionary ideas of Dame Cicely Saunders is the idea of “total pain.” According to the “total pain” concept, pain does not only have physical, but also psychological, social and spiritual sides. Those aspects of pain are interconnected: when we feel physical pain, it inevitably gives birth to psychological and spiritual suffering. On the other hand, we have all experienced cases when psychological pain has led to physical weakness. And if mechanisms of pathogenesis are connected, then healing mechanisms also have a chain effect. Bringing forward the idea of “total pain,” Dame Cicely Saunders first of all called us to look beyond the physical body and, in addition to physical symptoms, take care of other significant aspects for the individual. The irony is that today, in many countries, including in Armenia, many patients still suffer from severe physical pain that could in fact be treated.
Data collected by Human Rights Watch from nine polyclinics throughout Armenia shows that only 47 patients (i.e. less than 8 percent) out of 594 who died from cancer in 2011 received adequate medication (strong opioids) before they died. For a long time, Armenian legislation on pain management remained a key cause for such a situation. For many years, only oncologists had the right to prescribe opioids to outpatients (and only to cancer patients).
Today we have legislative opportunities to decrease the suffering of people who are in severe pain. But, in fact, a year after legislative changes, there is no serious increase in morphine prescriptions.
In 2017, after more than 10 years of extensive work, after many agreements, initiatives, hopes and disappointments, the Government of Armenia adopted Decision No. 1402 on Prescribing Medicine with Narcotic and Psychotropic Substances. This decision could change the whole picture of pain management in Armenia. According to this document, every doctor has the right to prescribe opioids to patients who need it. This expands the cycle of people whose suffering it will be possible to reduce: it’s no surprise that oncological patients are not only the ones who suffer from severe pain. The other important achievement is reduced paperwork: now, besides the signature of the prescribing physician, only the signature of the institution’s director and a seal is needed. Another important achievement for Armenia was the introduction of oral morphine, which is free for people with cancer and those with a 1st or 2nd group of disability.
So, today we have legislative opportunities to decrease the suffering of people who are in severe pain. But, in fact, a year after legislative changes, there is no serious increase in morphine prescriptions. And here we need to consider the issue of lack of information and a number of stereotypes.
Not only patients and families, but also many specialists are not fully aware of changes happening in the field of pain management, about their rights and opportunities.
On the other hand, we in Armenia still believe that “if they’re sick, they should suffer.” Very often, patients themselves and their families can’t imagine that they can go through a severe illness without suffering pain. People refuse morphine because they are afraid of addiction, of stigma and of death: a morphine prescription is often associated with imminent death.
The concept of pain management plays a central role in the concept of palliative care. That’s why palliative care is often equated to the opportunity of “dying without pain.” However, palliative care is in fact about “living without pain.” Besides, it is important to not forget about other symptoms: respiratory, metabolic, digestive, nutrition problems, sleep disorders and problems on the psychiatric spectrum etc.- even if it is impossible to eliminate causes of such symptoms, they need to be controlled.
Pain and symptom management bring us back to the concept of “total pain” where the origins of the symptoms are secondary to the need for healing the individual.
The concept of pain management plays a central role in the concept of palliative care. That’s why palliative care is often equated to the opportunity of “dying without pain.” However, palliative care is in fact about “living without pain.”
The Need to Hear and Be Heard
“Everything will be fine, don’t worry about it.” This is probably among the top 10 phrases heard by patients. We speak about fighting and winning over the illness, about not giving up, about being strong. With this, we doom the patient to go through their fear and pain in loneliness, to ponder alone the questions raised by the illness that can take their life.
Traditionally, our society rejects the expression of negative emotions: partly because we are not aware what to do with them, partly because we consider them a failure. But, there are times when just looking the situation in the eyes is bravery itself. In his book “The Doctor and The Soul,” Viktor Frankl describes an anecdote from the First World War. He talks about a Jewish doctor sitting in a trench with a non-Jewish guard. When the bombing starts, the guard makes fun of the Jewish doctor, saying “Admit it, you are scared – this once again proves the dominance of the Aryan race over the Jewish,” The doctor says “Of course I’m afraid, but the question is – whose dominance does this prove? If you were as afraid as I am now, you would have run away from here a long time ago.”
When one member of the family has a severe illness, everybody feels fear, everyone suffers. But, under the burden of “positive thinking,” everyone tries to appear strong and joyful. As a result, the family deprives itself of closeness, of intimacy – closeness implies sharing difficulties.
Meanwhile, the patient not only needs to be heard but also to hear, to be involved, to feel themselves emotionally significant. And feeling significant means not only taking, but also giving. The philosophy of palliative care teaches us that there exist situations when dealing with an issue doesn’t mean action, but simply presence. Practice shows, that sometimes just staying present with a person and their emotions is the hardest task.
It is clear that palliative care is directly linked with such fundamental human rights as the right to health; the right to life; freedom from torture, cruel, inhuman, and degrading treatment; the right to no-discrimination and equality/equal access; the right to information, and many more.
It is clear that palliative care is directly linked with such fundamental human rights as the right to health; the right to life; freedom from torture, cruel, inhuman, and degrading treatment; the right to no-discrimination and equality/equal access; the right to information, and many more.
The principles of palliative care can seem so simple from philosophical and legislative perspectives. Of course, an individual has the right to be treated with respect and dignity, to be free from suffering: what’s there to discuss?
During a conversation with an international expert in palliative care, I asked whether there is any need to speak about the principles of palliative care separately, when these principles are applicable for the whole medical system. “You are right. In an ideal world, we wouldn’t need palliative care, since all medicine would be built on those principles, but we are not there yet.” This was the answer. In fact, in an ideal world, we wouldn’t need to come up with such standards, since the world itself would be built on these principles… but we are not there yet.
In Armenia, palliative care is in the process of development. And this development requires not only legislative changes, financial reallocations and new services, but also, in order to ensure all these changes come to life, we must see beyond the individual’s suffering and pain and see only them.
