Anna Daria Nowicka – sociologist, NES healthcare: What made you take up such a difficult undertaking, which is a cancer workshop for patients and their families as well as for doctors and nurses?
Hanna Wasiak: My inspiration was my son, who became ill with cancer at 17, but despite that, succeeded in completing his PhD and currently works abroad. I myself had to face the terror of a possibility of losing my child. I had to find in myself the balance, strength and hope to fight the disease. Then I decided to help other patients and their loved ones. Doctors and nurses participate in my workshops too, where they have an opportunity to practise talking to cancer patients (e.g. breaking bad news to them), and an opportunity to find support in communing with patients on a daily basis. When I plan my workshop, I consult psychologists, doctors and chaplains. I have complemented my practical experience with postgraduate studies in Palliative Care and Hospice Counselling at the Institute of Family Studies at the Catholic University of Lublin. I also co-operate with the Hospice of the Good Samaritan in Lublin. I have received training in palliative care units and centers of prevention and treatment of AIDS. The main theme of the workshop is cancer, but more universal issues associated with any serious illness are also addressed.
ADN: People run away from these issues when faced with them, don’t they? Even for medical personnel conversations with patients are often depressing. Don’t these conversations about death, disease and suffering sap you optimism?
HW: Each of us is afraid of pain and illness of our own or our loved ones, but it is an integral part of life. You have to learn to talk about it, and not run away. I'm not a rock - I'm not impervious. There's always something that I absorb from the people I talk to or workshop participants. Not necessarily right away, during the conversation. Some situations I relive in my head in the evening of the same day, others come back to me years after and then reveal their full meaning. I am an optimist, and I encourage people to enjoy life, to know how to appreciate the everyday joys, so that at the moment of death they will be able to say - "And yet I have lived!”
ADN: You also conduct workshops for doctors and nurses. Contact with sick people is part and parcel of these professions. Do you believe that they need such training?
HW: Not every doctor is able to talk about an unfavorable diagnosis. Some of them, because of their lack of tact and empathy, cause additional suffering. I remember the story of Ania C. - a few years ago she saw her oncologist, who did not assign another appointment, saying: "There’s really no point...'.The doctor – an elderly lady, perhaps tired after a long night shift - did not give the patient any hope. Ania – against all odds – is still alive today! We don’t know how the doctors is doing, though ... This reminds me of a little epigram by Sztaudynger: “If it is not your time yet, not even a doctor can make you die.”
ADN: What do people with cancer and their loved ones expect from oncologists especially?
HW: Above all, we expect to hear the truth. But not the brutal, emotionless, hastily given to the patient truth, something along the lines of "breast cancer, type HER2, diagnosis: T-NHL-IV, large tumor -16.5 by 7 centimeters, probably malignant...”, and so on, machine-like, another doomed patient. We expect to hear the truth in plain language. A few sentences saying that the test results show this and that. But now cancer is a chronic disease and full recovery is possible. My son described to me the moment of breaking the news to him: the head of the ward asked him to step into his office. He told him about the cancer – lymphoma, calmly explained what the treatment consisted of, that it would be necessary to spend a few months in hospital, some of the treatment was going to be unpleasant. But there was no talk of death or having to fight for his life. Instead it was all about state-of-the-art treatment that the doctors use these days. My son was not scared for a moment. He left convinced that medicine has no difficulty treating cases such as his, it is only a question of time.
ADN: And what do cancer patients expect from doctors of other specializations? After all, they see gynaecologists or internists?
HW: We expect honest information from all medical personnel about abnormal changes that have been observed and guidance as to recommended procedures or tests. Sometimes doctors of specializations other than oncology and nurses are simply afraid to say anything, especially in the case of children. If your GP does not pay attention to any alarming symptoms, it may later be too late to start the treatment. This may also lead to the loss of confidence of the patient.
ADN: What behaviour on the part of the doctors do patients mostly complain about?
HW: Harshness, unkindness, lack of understanding, not being treated individually. Lack of time for patients. Hiding behind medical terminology and not being able to clearly explain the details of the treatment, the nature and prospective progression of the disease, the side-effects and risks of the recommended treatment, and the benefits and chances of recovery.
ADN: What behaviors and attitudes on the part of the patients, should a doctor expected in the event of communicating an unfavourable diagnosis?
HW: Denial, disbelief, rejection, tears, sobbing, breakdowns, doubting the point of treatment, sometimes aggression... Sometimes, however, patients are relieved to finally have a clear diagnosis given to them, they know what condition to treat. Sometimes they admit they expected an even worse diagnosis. More and more of the diseases once considered incurable are now regarded as chronic or even curable.
ADN: How can a doctor deal with this constructively?
HW: The doctor has to be mentally strong, because otherwise they would have cried for every patient s/he deals with... But this does not preclude empathy and sensitivity to the emotions of the patient. As one of the patients said: A good doctor, one that is aware that cancer does not have to mean death, will explain the patient’s situation and the treatment, they will give hope.
ADN: What skills do you think are necessary for doctors to talk to patients about serious illnesses?
HW: In addition to the sensitivity, kindness and understanding, communication skills are essential. The physician should be able to explain to the patient what his/her disease is, in plain language, not in incomprehensible scientific vocabulary or some patronizing ‘baby talk’. This is not small talk with a stranger you meet on the train. This is a crucial conversation that may decide our future life! This is a conversation that cannot be repeated - start again, get out of the office and in again ... During this face-to-face conversation, the doctor, with his words, gestures and facial expressions, will affect the patient’s decision as to whether they want to be treated or whether they want to abandon the therapy.
ADN: Can these skills be learned at all?
HW: Yes!!! But not from a multi-media presentation of a theorist or lecturer! One of the participants of the workshop put it like this: These skills are the basis to be not only a good doctor but also a human being, and one can learn anything if they want.
ADN: The research of Dr Kardas conducted among Polish patients shows that 57.6% of chronically ill patients said they did not follow medical recommendations, and one in six do not continue treatment when feeling better. What do you think could be the reasons for this? And could improving doctor-patient communication improve this situation?
HW: It is good to make a kind of contract. Something along these lines:
“I‘m the doctor. You are the patient. I have the medical knowledge, I hold a university degree and have a medical specialization in this or that. But it is you who are the “owner” of a sick body. I – the doctor – keep up to date with medical novelties, receive training to know what's new in drugs, radiation, and other types of treatment. I go to scientific conferences and symposia. I consult my knowledge with my colleagues. According to my knowledge and experience ....” And at this point, the doctor may tell the patient the pros and cons of the recommended treatment, its possibilities and threats. A kind of business-and-medical SWOT analysis.
ADN: What if the chances of recovery are close to zero?
HW: Your doctor may say: the diagnosis is unfavourable, but my long-term observation is that there is something in us that is capable of keeping us alive despite bad diagnoses, and against doctors’ opinions and medical knowledge.
ADN: What do you consider your mission in life?
HW: If the good Lord asked me now: Hanna, what do you want to do until the end of your days? - I would answer without hesitation: I will conduct workshops on "The quality and dignity of life with cancer."
ADN: Thank you for talking to me.
Hanna Wasiak is the author and conductor of a series of workshops on "The quality and dignity of life with cancer" for patients and medical staff. She has published articles on helping the sick and participated in congresses, conferences, symposia and radio programs. She co-operates with the Hospice of the Good Samaritan in Lublin. She has trained in palliative care units. In 2005, she completed her postgraduate studies in Palliative Care and Hospice Counselling at the Institute of Family Studies at the Catholic University of Lublin.
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