No voice

The incident

I was visiting an Indian lady patient who was at the end of life in her home.  Her husband and two daughters were present.  Her family were speaking for her despite her being able to speak English.  I felt that her daughters and her husband were dominating the conversation.

They were asking for help / treatment continuing with chemotherapy.  I felt uncomfortable as I sensed that the patient wanted to say something to me but was unable to do so.  I felt that she did not agree with what her family wanted for her.

I asked for a cup of tea and asked for some space with the patient.  When the family left I sat the patient down next me on the sofa and asked her what she wanted.  She said that she did not want to have any more treatment, she wanted to die peacefully and naturally.  She did not want to hurt her family but she felt that she was unable to choose what she wanted for herself.

I felt that her best interests were not being met by her family.  She had no voice.  I spoke to the family about other options, including a hospice or being admitted to hospital for end of life care.  The family were adamant that they wanted the patient to have further treatment to prolong her life.

Normally I would challenge the family to listen to the views of the patient.  In this instance I felt uncomfortable.  I felt I did not know enough about the culture to be able to assist these women.  I felt that if the family hierarchy was patriarchal, then even if I stand up for the patient, would she be strong enough to speak up?

The patient did not have any further treatment as her health deteriorated very quickly and unfortunately passed away soon after.

1. Identities of the actors in the situation

Narrator: Female, 62, White British, born in Northern Ireland. Married with two adult children and five grandchildren. Lead Macmillan Nurse, offers support to patients with life limiting conditions.

Patient: Female, Indian origin, mid 60s, diagnosed of terminal cancer (cancer of the ovary).  Able to speak and understand English well, she was a homemaker, married with two daughters in their 30s or 40s.

Patient’s husband: Male, Indian origin mid 60s.

Patient’s daughters: Indian origin, in their 30s, and 40s.

2. Context of the situation

The incident happened at the patient’s home.  The narrator was carrying out a physical assessment of end of life care.  At first family members of the patient were also present (husband and two daughters) but later on the professional was alone with the patient.

3. Emotional reaction

A negative reaction about the situation as the narrator felt that the patient should have been able to decide on her own fate and if she wanted treatment or not as it was her body. She felt upset in that if she had not had that time alone with her patient, she would have never known her wishes.

4. Representations, values, norms, ideas, prejudice: The frame of references of the person who experienced the shock.

Freedom of choice, individualism – The narrator believes it is important for patients to make their own choices, following their own preferences, also regarding end of life care and their treatment.  Concerning one’s own life it is one’s own desires and preferences that should have priority, not the family’s.

Assertivity, direct communication – the patient should have the freedom and capacity to say what she wanted and not be so worried about upsetting her family members. She should have her own voice heard.

Women’s emancipation, equal rights of men and women: the man in the family should not have more power than the women. Women should stand up for themselves and be strong.

The mission of the professional: Patient comes first, their wishes are what is most important and patients should not feel coerced into doing something they do not want to.  It is the professionals job to ensure their patients are heard.

Respect of culture – The narrator suspected there were some cultural rules that she should be aware of, should respect in order to appropriately assist the women and to challenge the family members.

5. What image emerges from the analysis of point 4 for the other group (neutral slightly negative, very negative, "stigmatized", positive, very positive, real, unreal) etc?

Submissive and helpless / negative.

6. Representations, values, norms, prejudice: The frame of references of the person or group that is causing the shock / that caused the shock in the narrator.

Focus on the family rather than oneself (more relational or collectivist orientation) – The patient is at her end of life and knows how difficult it is for her family. She does not want to upset or hurt them further, and tries to take into account their feelings.

Indirect communication style : in line with a more relational orientation expressing one’s wishes directly, at odds with the others is not polite nor desirable.

7. Does the situation highlight any problem concerning the professional practice, or in general about the respect of cultural differences in intercultural situations?

The cultural orientation towards individualism or collectivism (also called interdependence) is one of the most important dimensions of cultural differences.

On one extreme, the individualists take as basic social unit the individual, and they tend to cherish the freedom of choice and expression of the individual, reflecting individual preferences. Seen from a more collectivist vantage point such behaviour is disrespectful and highly egoistic.

From the individualist perspective members of more collectivistic or interdependent societies often appear as unable to stand up for themselves, unassertive and sometimes even irrational.  Professionals have to be aware of this bias in their own perception and evaluation of the others.

The case also points to the challenge of the management of diversity in general.  Once the professionals suspect that some cultural differences apply, in the lack of concrete knowledge they may be tempted to take the avoidant strategy: they don’t take action by fear of interfering in some cultural practice.  Often they do so merely based on their own preconceptions or prejudice about some cultural difference. In such case we can talk of culturalisation (attributing a phenomena to culture even when other explicatory factors apply).