'That injection killed him!' 'He was the kindest man who ever lived.' 'The hospital never told me he was going to die!' 'We did everything together…'These are just some of the things that have been said to me as a GP after a patient's death.
Comfort and compassion
At a deathbed we are confronted with our own mortality and our dependence on God; we doctors are more likely to help our patients and their relatives if our whole lives and the way we practise medicine reflect this dependence. We are not in control, but 'we can comfort those in trouble with the comfort we have received from God'[1] when our behaviour (including the way we may touch someone or allow them to cry) demonstrates compassion. We need to listen carefully, speak the truth and, as the Spirit gives opportunity, offer words of hope.
To comfort someone is to give them strength to face their situation as it is; so we need to give relatives unrushed time, acknowledge that our patient has died, and express our sympathy. They may have questions or comments and our first duty is to listen. Asking questions – what actually happened or how the rest of the family are – may help someone to get talking.
Criticism
We ourselves may be distressed at the death. Our reaction may be tinged with regret that our clinical decisions or dealings with the family might have been better. Relatives may also be looking for someone to blame and we need to try not to be defensive, but to give our full attention to comments that have the seeds of complaint within them and answer them carefully. It is important not to say anything that might be taken as critical of another healthcare professional – careless comments by colleagues have sometimes given me extra work to do in explaining a situation to a relative.
Life after death
After expressing sympathy, clarifying the facts and listening to relatives, there may be opportunity for us to give a word of hope or simply to start talking about the next chapter in their lives. It is not our sole responsibility to help relatives in bereavement, a process that takes time. Our role is to make ourselves available and let them choose how much they want to see us. Raising a personal faith flag like 'I do believe there is hope after death 'may be appropriate and I have found that relatives may welcome an offer to pray with them. Yet we must act with 'gentleness and respect'. [2] If relatives show signs of not wanting to talk yet, we should withdraw, leaving a clear signal that we are available if required.
We do not want to be a Job's comforter of whom he said, 'miserable comforters are you all! Will your longwinded speeches never end?' [3] The Old Testament tells that, when Jacob heard of Joseph's presumed death at Dothan, 'All his sons and daughters came to comfort him, but he refused to be comforted'. [4] May God help us to know when to keep silent.
I have known relatives come to faith in Christ after the death of some of my patients. I'm sure that, if we are prayerfully sensitive to the Spirit's leading, God will give us opportunities to speak of him in a way that will help some relatives move closer to a relationship with him. In my experience though, others will often be involved in this process: even by simply encouraging relatives to get in touch with a church or another Christian, a doctor may be doing something that makes a difference for eternity. Let us be prayerful and vigilant, always looking for an opportunity to show Christ's love and make him known.
Interview with a hospice counsellor
Linda, why did you decide to become a counsellor?
I think that life experiences led me to the decision. As a young woman I lost my mother quite suddenly to breast cancer. I became the family matriarch, supporting the rest of the family in their grief. I felt very alone. Later I worked as an EPAC (Early Pregnancy Assessment Clinic) health care assistant; I watched countless women find out that they'd lost their babies. It was heartbreaking – some of them had no-one to turn to, to talk to.
How did you end up in hospice counselling?
I believe that I was called to this place. Perhaps the experience I went through after my mother's death is another reason. It helps that I'm not frightened of death and dying, although I did feel a bit strange the first time I saw a freshly dead person! The atmosphere here is incredibly peaceful and I know I am in the right place.
What exactly is hospice counselling?
In a nutshell, counselling is skilled listening. We listen to patients, relatives (both before and after their loved ones' deaths) and other staff. By doing so, we facilitate openness and sharing between dying people and their families, between rival family factions, and between patients and their medical and nursing teams. Simply talking their illness journey through can help some patients accept that they are terminally ill; that the time for fighting for a cure is perhaps over; that it's time to switch focus to alleviating their symptoms. Sometimes it is easier to talk to a complete stranger.
Many terminally ill people have unresolved issues that can hinder them in coming to terms with impending death. It can cause unpleasantness at the bedside with tension persisting within a family. Symptoms associated with a patient's illness (for example pain) are often exacerbated too: the concept of total pain – the sum total of pain, composed of true physical pain as well as emotional, social and spiritual pains – is well known in palliative care. Despite high doses of appropriate analgesics, some people with emotional or spiritual distress continue to complain of physical discomfort. Counselling can go a long way to relieving this total pain.
Does your faith affect your work?
Immensely – although by no means everyone working here is Christian, having a belief in life after death really helps in hospice work. It helps me be sensitive to people's spiritual needs. We work closely with our chaplains, one of whom is also the hospice's chief executive! Occasionally, people prefer to talk solely to the chaplains, thinking that the word 'counsellor' has psychiatric connotations!
How do you spend your day?
I work as part of a counselling team. Between us we provide support for all the ward patients and their families. Once allocated to a patient and/or their family, we try to keep a personal service going so that they can come to know and trust a specific counsellor.
After a patient dies, we hold a DAD (Day After Death) meeting with relatives and close friends: they are given the opportunity to view their loved one in a comforting environment. The death certificate is handed over and they have the opportunity of asking a doctor about the given cause(s) of death.We also advise them on the business of registering the death and arranging the funeral. Lastly we offer the opportunity of further counselling input.
In addition to our ward work, we care for patients in the Day Hospice and those on our community medical team's books. Group counselling sessions cater for patients' children, spouses and carers. There is also a life limiting illness group that helps younger patients with conditions such as multiple sclerosis come to terms with their lives.
What communication tips could you give?
Unfortunately we witness a lot of emotional fall-out resulting from poor communication between medical/nursing staff and patients or relatives. Many doctors communicate fantastically most of the time. However, all of us can improve the way we deal with terminally ill patients:
- Make time. Book them a double GP appointment. See them at the end of your list. Go back to them at the end of the ward round.
- Rapport is everything. Don't talk down to patients. Sit at their level.
- Don't assume. Check out what is written in clinic letters or notes about a patient's understanding of their illness.
- Slowly slowly. Practise asking open-ended questions about how much they know. Take it step by step. Respect a patient's decision not to know or to continue in denial.
- Watch an expert. Most hospice doctors and oncologists are experts in the art of gently breaking bad news.
