The Bucket List - a short review for healthcare staff

(See also what the International Movie Database says about The Bucket List)

Please note: This article may spoil your spontaneous enjoyment of the film. A number of significant events are revealed, so if you want to watch the film without preconceptions, we advise you to read the article after watching the film.

Theme: Living with a cancer diagnosis

A story about two terminally ill men escaping from a cancer ward and heading off on a road trip with a wish list of to-dos before they die.

By Töres Theorell, Professor of Psychosocial Environmental Medicine at The Institution of National Health Science, The Karolinska Institute

Comment on the film

The film presents a clear picture of both rational and irrational thoughts and actions in two middle-aged men suffering from cancer in advanced stages. Their differences in background are evident at a glance: one of them (A), despite a good education and university life ambitions, has been forced to live a simpler professional life, but has a happy family life. The other (B) has succeeded in becoming immensely rich as a businessman and has therefore succeeded with his career superficially but has at the same time had a miserable family life with four wrecked marriages behind him.

The news of cancer triggers anger in B and a number of aggressive outbreaks and at the beginning open hostility to A and his family. This is a type of behaviour that is natural at this stage in many patients. B displays more of a quiet, resigned behaviour.

These patients, who share difficult treatments with cytostatics, for example, should be monitored. They both eventually enjoy a remission and feel really good. But both are given the news that they only have a few months left to live – that the cancer will begin to grow again after a while. Whilst B reacts depressively to this, A thinks that they must now instead “go on a spree” together, which he persuades A to do with him. They do things which they have both dreamt of, e.g. parachute jumping and racing cars (against each other). In this situation A, who otherwise leads a quiet, suddenly becomes euphoric and ”lets things rip”. Both of them develop a very special relationship and B tries, among other things, to persuade A to be unfaithful, which he absolutely refuses to do.

It turns out that A’s cancer flares up again and he dies, whilst B, on the hand, lives another 20 years. His life has completely changed and his quality of life is much better than before.

The film illustrates several of the subjects we have discussed in the text. These patients do not receive all that support from the organisation, but as time goes on they mutually support each other to a considerable degree and they are able to help each other put their lives into perspective and understanding it much better. They ”express themselves” by doing things they have previously only dreamt of. B gets the opportunity to do what I mention in the case below with the 55-year old patient who managed to solve certain difficult problems relating to family relationships in connection with the fact that a course of cytostatics has rendered him free of symptoms over a period of several years. B thought that this would be the case with him, but it later turned out that he instead survived much longer.

INFORMING PATIENTS OF SERIOUS DISEASES
- giving and receiving information

Giving information on serious diseases

Informing a patent and/or his/her relatives that he/she has a serious disease, e.g. cancer or amyotrophic lateral sclerosis, is an extremely difficult task. For the patient the information may mean fast approaching death or a drastically different existence. And even if there is a good outcome medically, e.g. cancer radically operated on or treated with radiation, the patient will always see his/her life differently than before after the experience.

For the young doctor or care provider who imparts such information for the first time in his/her medical career the experience is quite different than for the older experienced doctor or care provider. The care provider who has been in the situation before feels more confident quite simply because the reactions can be predicted to a certain extent. But this does not mean that the person who has experience necessarily acts more correctly than the person who lacks such experience. There will never be such a clear distinction between the skill of the care provider and the patient’s and relatives’ unique experience of the news as at the very time the news of a serious disease is to be broken. An experienced care provider may have adopted destructive tendencies.

The examples described refer to patients suffering from cancer but the principles can obviously be applied to other life-threatening diseases which have their own particular starting points and circumstances.

What are required of the care provider when bad news is to be given are:

1. Empathy for the situation of the patient and relatives.
2. Knowledge of the social situation.
3. Knowledge of the medical history and medical conditions of the patient.

1. Empathy for the situation of the patient and relatives

If the care provider is aware that he/she cannot empathise with a certain patient it should perhaps be arranged that a colleague break the news. Both the patient and relatives expect positive involvement on the part of the care provider to manifest itself in some way. Everyone knows that the care provider cannot be as emotionally involved as the patient and relatives, but an insensitive and instrumental attitude may destroy much of the carer/patient/relative relationship and make continued communication difficult.

2. Knowledge of the social situation

A common question is whether all patients should be informed that they have cancer. It is generally the case that they should because it will almost always be a question of long-term, difficult treatments. Motivating the patient for such treatments is difficult if he/she has not been properly informed about the disease. The relatives may sometimes say that the patient should not be informed of his/her diagnosis “because he/she should not have to bear such bad news”. In such a situation the advice from relatives should not generally be followed. For example, it should be borne in mind that family relations can become very complicated if it is only the relatives who have knowledge of the diagnosis. The fact that the relatives say this may be because they have an over-protective attitude towards the patient. The nature and prognosis of the disease must be seen in the light of the patient’s social situation quite irrespective of what the relatives say. In the case of a woman who is a single mother of young children, and it is likely that she will die soon, she must obviously be given the opportunity to make arrangements for her children. On the other hand, if the patient is an elderly person upon whom no one is reliant, and who has a slowly progressive disease, it is not a matter of course that he or she should be informed of the diagnosis. My grandmother on my father’s side was an example of this:

92-year old widow living on Östermalm sustains a collar bone fracture from a fall. Following the operation she dies from a pulmonary embolism after a few days. The autopsy reveals that she had an abundance of metastases from a breast cancer. In fact her son and daughter in law had been well aware of this because ten years before her death the patient had complained of abdominal pains. In a laparotomy a rich seeding of cancer metastases was observed in the abdominal cavity from a breast cancer previously operated on.

She was therefore already quite old when the laparotomy was carried out and her cancer was growing so slowly that that it could be assumed that she would die of a quite different disease, which she did. She lived a well-ordered life with plenty of nursing assistance, and there was really no need to inform her of the diagnosis.

3. Knowledge of the patient’s medical history and medical conditions

In such a sensitive situation the care provider must be conversant with the medical condition of the patient. If he/she deviates from the objective and seems uncertain about the investigations that have been carried out or what laboratory analyses have shown, this may be interpreted as arrogance and the relationship is spoilt immediately. The care provider must therefore be properly prepared for this situation. On the other hand, a certain amount of humility when it comes to general knowledge about the disease in question may be a good thing. The patients and relatives of today are often well read and may have gained knowledge on the Internet which care providers cannot dismiss lightly.

Communication after the bad news

When the news has been given the next phase of the communication begins immediately. What form will continued treatment take? The treatments that are available are becoming increasingly active and the proportion of cancer patients who are cured is growing all the time. But it is still a fact, in many cancer cases, that only treatment that gives temporary remission can be offered. This is of course true, for example, in many cases of cancer with metastases. The situation must be clearly explained to patients and relatives so that they have a say in the choice of treatment. Is it worth undergoing difficult treatments, with pain, sleeplessness and nausea, in order to regress the metastases a little, or should one respect the will of the patient to be allowed to die without treatment when it is only a question of prolonging life by a few months? Here too the doctor/care provider must take account of the social situation. A couple of examples are described:

A successful businessman aged 55 has cancer with metastases. He is in pain and it is obvious that the cancer could be regressed a little with cytostatic treatment. But in this case he would experience nausea and other discomforts resulting from the treatment and it is most likely that the cancer would again progress without remedy. It is decided to treat him, involving several weeks of discomfort and inconvenience. This is followed by a few months of relative freedom from symptoms. The metastases then begin to grow again and sure enough he dies a few months later.

What is decisive in this case for the patient was that during the period where there was a reduction in symptoms he managed to deal with relational problems in the family, among other things a complicated relationship with the wife he had divorced. When he died he felt that he had been able to sort out these relationships, which was important both to the patient and to his former wife.

Psychotherapy

To be told you have cancer is an extremely traumatic life event for most people and a high proportion of patients require some form of psychotherapy at some stage. When in-depth follow-up interviews are conducted with patients in this situation it is found that feelings of depression, suicide and hallucinations are very common (see, for example, Ulla Qvarnström’s dissertation from around 1978). At the oncological clinics in Sweden there are psychotherapeutically trained staff who have specialised in the problems of cancer patients. Different forms of psychotherapy may be appropriate, from shock therapy to cognitive behavioural therapy, as well as different forms of psychodynamic psychotherapy.

Psychodrama

In psychodrama relationships between people or between the patient and a phenomenon, e.g. the pain or disease in relation to the patient, are most often expressed. In most cases there are several participants in a psychodrama. The work of the therapist often involves assigning the various participants different roles that may have to do with the disease of a particular patient or the relationships of relatives with the disease or the patient. This may be very effective for patients who need to gain a perspective on a difficult life situation that has arisen after being informed that he/she has cancer, for example.

A female psychiatrist 75 years of age is suffering from an unusual form of lymph gland cancer. It is uncertain whether the treatment is able to produce results, but it is nevertheless likely that freedom from symptoms could be achieved by cytostatic treatment for quite a long period of perhaps several years. She lives alone and says that after careful consideration she wants absolutely no treatment whatsoever because she knows that the treatments will be very difficult and force her into a prolonged period of illness which she certainly does not want. Her wish is respected and she dies a few weeks afterwards.

This is a person who believes that she has no social problems that need attending to. She is very well aware of the risks and possibilities that the treatments may involve. The care providers understand that the patient has taken her decision on the basis of sound knowledge and make no serious attempts at talking her out of her decision.

Helping the patient and the relatives when the disease has been confirmed

How can a patient be helped to achieve the best possible quality of life in the face of a recently confirmed serious illness? Obviously there are no general answers that can be given to that question. What can and should be done depends of course on what the disease is and its prognosis, but also on the care resources that are available and the social situation of the patient. There are now psychosocial units at cancer clinics with considerable resources, which is the case, for example, in Stockholm at the Radium Home and Southern Hospital, but in other university cities throughout the country. It is quite normal to experience mental reactions to the news that one has cancer both when one is a patient and when one is a relative. However, some people react so strongly that psychosocial support is absolutely necessary. This may take different forms of psychotherapy, but also art, music and dance therapy (see separate fact boxes). This has proved to be very important to many patients. Specially trained therapists are important in such processes, and in music therapy, for example, it is useful for the therapist to know how to find out the patient’s musical preferences, how music and sound are produced together to assist in the therapy and how music to listen to is selected if a particular patient (who has his/her individual musical experience) needs to reinforce a certain type of feeling (see, among other things, “When Words are Not Enough”, editor Töres Theorell, Natur och Kultur (Nature and Culture) 1989).

Research in Umeå has thrown light on the effects of art therapy for women with newly discovered breast cancer. Apparently art therapy enables them to express their experiences of having contracted cancer. This in turn means that they are more easily able to return to their normal life after the cancer treatment (see, among other things, Karin Egberg Thyme: What do you see? Studies on time-limited psychodynamic art psychotherapy. Academic Thesis, Umeå University, 2008).

If the patient lives in a rural area or in a small town, he/she may be a long way from special resources. However, the care providers may be of assistance by determining the preferences of the patient and using their imagination. It may also be a question of encouraging relatives who have good ideas. An interesting example of where painting or drawing pictures may be very meaningful to the patient with a serious disease is as follows:

A 59-year old man who in recent years has played an important role as expert and lecturer at major conferences suffers a cardiac infarction and is admitted to hospital. When he comes home it turns out that he has severe angina pectoris which keeps him awake at nights and causes him to experience considerable anxiety. Working in his previous capacity is totally out of the question. Like many other patients in high profile positions who run the risk of being recognised if they participate in groups, he does not want to attend group meetings with other patients who have a similar disease. His wife has a brainwave and buys paints, brushes and other art equipment. The patient has never painted before but now starts to do so and soon finds that his anxiety is alleviated and that the angina attacks also decrease in intensity and frequency. He develops into a prominent naivistic painter and therefore launches himself into a whole new career which also involves organising exhibitions of his art.

The role of the care providers in this serious case of cardiovascular disease was therefore quite simply to support the patient and wife in his painting activity.

 

Illustration by Ingrid Henell

Patient groups as a resource

If a care provider has patient responsibility on the outskirts of a town some distance from the considerable resources of the university hospitals, he/she has to use his/her imagination, as already mentioned, and try to support the patient and relatives by adopting unconventional methods. With any chronic disease the patient group can be used as a valuable care supplement. Of course the problem may be that in rural areas it is also difficult to bring together sufficiently large patient groups with a particular form of cancer, for example. However, if the care provider works in an area with many old people it is often possible to form sufficiently large groups of patients who have similar diseases, e.g. a group with some form of cancer and another group with a neurological disease.

As group leader the care provider should be accessible and should want to stimulate discussions, for example with lectures on relevant subjects. But most of the group discussions should be devoted to ensuring that the patients themselves are encouraged to express their own problems. Hearing others describe problems that remind you of your own is very important and may be of great help in developing an improved quality of life. It is important that the group leader does not ”take over” and speak too much him/herself. However, the person who leads the group must help create space for everyone in the group so that it is not one or two people talking all the time. Assistance may also be provided by one’s university hospital, with advice and possibly also lectures for the patients. 

Social aspects

Creating support resources is extremely important when the patient has limited financial resources. Those who have a large social network and good material resources often establish together how they should improve their quality of life during the course of the serious disease. It is therefore important to ensure that all patients feel welcome when participating in the activities arranged.

A high proportion of the diseases we are talking about lead to existential problems even when the disease is cured. Examples of this are sterility after operations on sexual organs, handicap after amputations and neurological deficiencies such as paralysis and speech disorders. These require special measures which are not discussed here.

Art Therapy

Allowing the patients to express themselves in art may often prove useful in the case of serious diseases. In their art they can often express something that they cannot put into words. There is both ”active” (the patient produces the art him/herself) and “passive” (looking at pictures and interpreting them) use of pictures. Often the patients work in an art therapy group. It is a question of getting them to work without prestige and without any demand for ”art production”.

Sometimes simple tricks are employed to persuade the patients to produce pictures, e.g. they are asked to scribble on the wall (graffiti) or make a picture of their pain. Together with the art therapist (who must have a knowledge of both art and psychotherapy), the patient then interprets his/her own pictures. This takes place both at the time (at the very time the picture has been produced) and when a process is to be understood (what kind of pictures did I draw first, and what do the pictures look like now a few weeks later?). Art may be of considerable help to the patient if he/she is to understand his/her situation, particularly when the pictures are organised in a time series.

Music Therapy

Music therapy can also be used for patients suffering from serious diseases. The active form involves the therapist and patient making sounds together and the passive form involves listening to music together then talking about what they have heard. The therapist must have training both in psychotherapy and music to ensure that the best results are achieved in the case of serious diseases.

Experience of music can strengthen emotions and feelings. For the therapist it is a question of determining that needs the patient has in terms of strengthening of emotions at a certain stage, and of knowing the type of music (passive or active) the patient needs to achieve this. At a certain stage it may be important to relieve distress and there are certain forms of music that suit this particular patient in this situation. In other situations arrogance or perhaps anger may need to be dealt with instead. It is important for this work to be individualised.

Dance Therapy

Expressing moods and life situation in body movements also gives patients with serious diseases the opportunity to gain a perspective of his/her own life and an opportunity for self-insight. In this respect dance therapy has the same potential as art and music therapy. The dance therapists focus on how the patients express their self-esteem in the body when they dance or move to express a particular phenomenon (e.g. their pain) or a course of events. A therapist who is trained both in psychotherapy and dance can therefore help many patients who do not express themselves in words around their life situation. Here too individualisation is of decisive importance.

A common feature of the different therapies I have described is that the therapists who run the treatments must be trained in psychotherapy and in the art form (art, music, dance and psychodrama). At the cancer clinics in Sweden there is access to these different forms of therapy to varying degrees.

Theorell T (editor). When Words are Not Enough. Natur och Kultur (Nature and Culture), Stockholm 1998: In this book examples are given of course of therapy for severe chronic pains in conjunction with art therapy (Ann Mari Lagercrantz), music therapy (Robert Engström), dance therapy (Karin Thulin) and psychodrama (Judit Teszary).

Olofsson A, Fossum B. Perspectives on music therapy in adult cancer care – a hermeneutic study. Oncology Nursing Forum, 2009, being printed.

Karin Egberg Thyme. What do you see? Studies on time-limited psychodynamic art psychotherapy. Academic thesis, Umeå University, 2008

Alm A and Hammarlund I. Art, dance and music in the healing process. Natur och Kultur (Nature and Culture), Stockholm 1999: There is plenty of material in this book on art, dance and music in the course of treatment of serious diseases.