Talking About Dying in Cancer - Is It Not Time?

When treating a cancer patient nearing the end of life, doctors’ open communication and shared decision-making with patients and relatives are as important as other clinical interventions. Refusing to talk about death can make communication between healthcare professionals, patients and families even more difficult. Silence may also harm communication between patients and relatives. Without discussion, confusion, uncertainty and various care-related complaints may arise. We therefore believe it is long past time to talk about death.

Nothing can be done to prevent death, but much can be done before dying.

Research in April 2008 reported that more than 54% of dissatisfaction with cancer treatment concerned end-of-life (terminal) care. Another 2011 study found lower satisfaction among terminally ill cancer patients in hospitals than those in palliative care centers (around 50% versus 80%). These findings show that cancer hospitals should offer specialized palliative care tailored to individual needs or refer terminally ill patients to a palliative care center.

- What Is Palliative Care - Supportive Treatment? Why Is It Important in Cancer?

Communicating with compassion

A survey of hospital doctors found that 39% of end-of-life care complaints resulted from poor communication (32% concerned general medical conditions and 26% surgery). Complaints in palliative care centers likewise largely concerned communication. However, when the healthcare team manages the end of life well and communicates appropriately, the deceased patient’s family generally greatly appreciates the doctors.

When a relative of a terminally ill patient complains, doctors see that the family is going through a difficult time. A main concern is feeling that no one communicated properly from the beginning. Good communication among doctor, patient and family generally means the process is considered better managed, whatever the physical outcome.

A doctor may believe important information has been conveyed, but patients and families may not fully understand, particularly when distressed or vulnerable. Families often develop unrealistic expectations. They may defend themselves by not hearing what the doctor says. Doctors should recognize this, repeat information and check understanding.

Patients, relatives and healthcare teams should ensure, as far as possible, that the patient’s needs are met and feelings respected.

- The importance of early palliative care (supportive treatment) in stage 4 cancer and the subtleties of palliative care

The aspect of blame

Complaints often arise from stressful events when people are most vulnerable and frightened. Families experiencing grief, anger and helplessness may seek someone to blame for their loved one’s death. However, the problem often lies in the conflict between family expectations and reality.

Healthcare professionals should avoid becoming trapped in relatives’ complaints and address issues openly, honestly, professionally and within an appropriate timeframe.

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What can doctors do to reduce complaints?

The physician managing cancer treatment should explain to patients and relatives what is likely to happen in palliative care. Doctors having seen similar situations many times does not mean patients or relatives know what may happen.

Anticipatory prescribing is also important. Medications and prescriptions should be prepared with the patient’s likely needs in the coming days or even hours in mind.

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During the anticipated course, quality of life care plans are needed. Patients are generally pleased to have such conversations. Doctors often fear upsetting them and may hesitate to initiate discussion in advance, but it is actually helpful.

If hospital relatives were not prepared by doctors for death, providing information and explanations shortly after the death may ease concerns. Communication throughout this process, explaining events and answering questions, can reduce complaints. More importantly, families need compassionate explanations of what has happened.

An important point for staff is thoughtfulness. Immediately packing the deceased person’s belongings and quickly returning them to the family, or starting to clean the room at once, may make the family feel devalued.

Responses to death differ across cultures

Some cultures accept death; others deny it, and some use aggressive medicine to defy it. Influenced by Western culture, we often try to deny and challenge death.

If both doctors and patients were more honest about medicine’s limits, death could be discussed earlier and many end-of-life complaints prevented.

In some cultures, openly discussing death is unacceptable. It may be perceived as disrespectful, bringing bad luck or causing loss of hope. Some families may need religious leaders to facilitate discussion. This should not be done to end end-of-life care; doing so makes healthcare professionals’ work harder.

A cultural mismatch between doctor and patient can make communication about expectations harder. If reality does not meet expectations and expectations remain undiscussed, complaints often result.

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