Bruce Robinson is many things to many people. Bruce is a highly trained medical professional, medical researcher, global public speaker, author, father, grandfather, and compassionate soul. His list of accomplishments is impressive and provides a perspective into the mindset of the man. As Australia’s leading mesothelioma expert, Bruce has spent the past 10 years as the Director of Australia’s National Centre for Asbestos Related Diseases researching and seeking cures for victims of asbestos exposure.
Concurrently since 1994, Bruce has taught and trained Australia’s future doctors as a Professor of Medicine and Lung Specialist at the University of Western Australia and he has served at Sir Charles Gairdner Hospital in Perth. In addition to his service as an educator, Bruce Robinson has spent the past six years as the Director of the International Skills and Training Institute in Health. Bruce’s community service and philanthropy through medical practice, research, training, and providing medical assistance to people in need has set the tone for his leadership philosophy: ‘servant leader.’ Through his many activities, Bruce was honored as Western Australian of the Year (2013-2014) and WA Australian of the Year in 2014. His most recent honor was selection to the prestigious Order of Australia (AM) award.
Yet with all of his work to help people, train people, and provide hope for a new cancer breakthrough, Bruce Robinson’s greatest legacy may be in his work with terminally ill cancer patients. One of the greatest regrets terminally ill cancer patients have expressed to Bruce “If I had my life all over again I would have spent more time with my family” became the cornerstone for his work in The Fathering Project. The Fathering Project’s goal is to educate and train young fathers starting families in the great importance of a strong father figure in their children’s lives. The positive affect of strong role models in the home on children has resulted in the reduction of youth substance abuse, crime, low self-esteem, poor attitude to school and loss of values. Bruce and the team are very excited to know that the work through The Fathering Project has benefited well over 50,000 children.
Understanding so many terminally ill patients’ regret of not spending time with their families and his work to teach young fathers how to step into the leadership role of their families, led Bruce to write a poignant and dramatic article: “What to do if family or friends get bad news about cancer.” The following is Bruce’s article which focuses on dying and coping with a cancer diagnosis. As Bruce states:
“This discussion about dying well or dying badly is not about euthanasia. It is about how you manage the dying process.”
What to do if family or friends get bad news about cancer
“I just want to die now. I am living in hell”
That was a fifty year old cancer patient. “I am sorry to hear that – are you in pain?” “No” she said. “But, my husband is angry all day, because he is stuck in the anger phase of grief, my son couldn’t stand it so he moved in with his girlfriend which has made my husband even angrier. To add to it all, he is angry with my daughter because she drops in each evening on her way home from her hairdressing job but doesn’t do anything to help, she just sits on the sofa and talks to me just like she has always done, without ever mentioning the cancer. My husband is angry with her because I make her cups of tea and cook her dinner in the same way that I always have and he thinks she should do it. I just want to die now”..
I will share later how this ‘living hell’ turns into a happy ending.
This discussion about dying well or dying badly is not about euthanasia. It is about how you manage the dying process. As a lung specialist I have looked after hundreds of patients (lung
cancer is the most common lethal cancer) and have in the process watched and participated in
the ‘journey to death’ of many patients and their families. This article is for carers and patients alike. It makes people cry. It might make you cry
Dying is ‘normal’, but there is a good way to do it and a bad way to do it. This applies not only to the patient, but also to family and friends.
When the dying process is handled badly, the survivors can be left with a life-long bitterness
You only have to open the daily newspapers to see examples of bitterness that flow on from badly handled death – rage expressed at the hospital, the doctors, the government or God. But when death is handled well, there is a way in which the surviving family members often describe a positive effect on them, such that they say “I am glad we handled it that way”. This is a reflection of the old but true saying “Death handled badly makes people bitter, death
handled well makes people better”.
Handling death well starts from the time that the diagnosis is given. This is partly out of the control of the family because it depends a little bit on whether the doctor, or other person giving the news, knows how to do it according to best practice. You need to decide whether or not you and your loved one want to know the prognosis. Not everyone wants to know the prognosis. It is easy to not want to know and to even deny the presence of the cancer. I have to be honest and say that in general it is best if they do know, not necessarily at the first consultation but soon thereafter. I respect the rights of patients to live and die in denial. I just I don’t ever see it helping much – short term gain for long term loss.
Read on and you will understand why this bit is important.
Once the cancer diagnosis has been explained and the treatment commenced, the journey to death continues. This is a scary journey but it can be made better. Here are some of the things that I have noted that in my practice have worked well.
- Don’t avoid talking about the cancer. Avoidance is a very powerful reaction, either in the patient, or amongst loved ones or even amongst medical or nursing staff. It is natural to avoid talking about things that make you feel uncomfortable. Indeed, it is often a reflection of love – being so afraid that you will say the wrong thing that you say nothing.
- Don’t create endless avoidance. Because death is about grief, and grief is about loss, and it is difficult to accept that the person is dying, it is easier to offer false hope e.g. “Apparently there is a new treatment in Mexico”, “I read about a patient with cancer who was healed by a fruit juice diet”, “I am sure the doctors have it wrong”, “Just keep a positive mental attitude and you will be healed” and a host of other phrases. Because they are reflections of love, I don’t wish to criticise them. However, they don’t save the patient from dying. They provide short term comfort but in the end increase anxiety and do not help the family to get on with grieving. While some of these can help the body cope with treatment, please don’t use them to stop you going on the journey of treatment and grieving together.
- Don’t talk about it continuously. Having gone ahead and begun to talk about it, don’t ask continually about it. Remember to talk about the children, the news, the football or anything, trying to treat them as normally as possible, without avoiding the issue.
- Don’t avoid visiting them. I often find that when a patient has a diagnosis they will have twenty visitors within the first few days in hospital, yet in the next two months after they leave hospital to go home they have zero visitors. That is understandable because some people feel so uncomfortable they don’t know what to say, and as a consequence they find
something else to do. Be willing to spend some time. Usually it is better if is not a lot of
time (if the patient can only handle a five minute visit, don’t say “I am sorry but I can only
stay for an hour”).
- Take the initiative. Don’t just say “if there is anything I can do to help….” but actually take the initiative and do something, such as help with shopping, offer to take them on a visit to the clinic, pick up children from school or relieve the family of the duty of care for a day etc. You might even want to help them pull together a photo album of memoirs that they wish to have for their children and grandchildren.
- Thank them for all of the things that they have done for you in the past…, Some good times that you have shared together for which you are grateful and their characteristics that you have admired over the years. I have a magical phrase that I use with my patients, a phrase that has helped every single family that I have used it with.
“Plan for the worst but hope for the best”.
Their doctor may have told them something like “it could be as short as three months or as long as a year”. Planning for the worst means planning for the three months. What does that mean? It means that I encourage the patients to plan to do within those first three months (when they will be at their fittest) all of the things that they wish to do. For example, going to Paris, seeing Uluru, or whatever.
- …and tell them about your dreams for their future. This approach reaches its most poignant expression when it comes to writing letters or memoirs for their children or grandchildren e.g. letters for their children to open on their twenty first birthday, or a wedding day, describing their aspirations for them and how much they love and value them and admire them and believe in them for the future. When they do this their tears fall on the pages. But if the patient waits until the end of their disease course they are often too tired or affected by painkillers to be write such letters. I have seen that happen, avoidance of these hard things, and this is sad because it robs the children of a real gift, the gift of reading those letters in the future.
I sometimes think that avoiding the reality of death is like seeing a black door in the house and walking past it all the time, afraid of going through it, afraid of what is on the other side.
If they do get to the point when they are able to put their hand on that black door handle, turn it, open the door and walk through it, to their surprise they can enter a garden. In that garden there is a lot of expressed love, and they notice that the sky is bluer then they have ever noticed before, that the leaves of the trees are greener than they have ever noticed before and that because every day is a gift, they live the rest of their life with gratitude. That is not to say that they don’t suffer physically or emotionally in the process, but it is to a large extent the difference between dying badly and dying well.
Recently a patient of mine died having spent six months in complete avoidance. She never talked to her teenage daughters about the fact that she was dying. Although at her funeral someone described this “as showing the kids how brave she was”, I thought the opposite. Knowing that you won’t be there to see your children grow up, see them graduate, walk them down the aisle and see your grandchildren born, you are able to declare your confidence in them, your hopes and aspirations for them as people and the gifts that make them special now and which will make their futures special. You can ask them to take any good thing they have learn from you and ‘pay it forward’ to others, rather than always looking back.
That is why dying well “makes people better” – survivors are enriched by the process.
So what happened to the fifty year old lady with the angry family who was in living hell?
Well, by an extraordinary coincidence, I went for a haircut and after a brief conversation I sensed that the lady cutting my hair just might be her hairdresser daughter. So I brought it up. She knew who I was but was clearly relieved when I brought it up – that told me immediately she was an avoider. I arranged for the Cancer Council Family Counselling Services to visit them and they all sat around talking about the cancer, overcoming their reluctance, holding hands and crying. I know this because when I went to visit my patient in the hospice, she said to me “Bruce, great to see you. I don’t know what you said to my daughter but everything has been transformed. My husband is no longer angry, my son has moved back home and is helping and my daughter is now happy to talk to me about my cancer. In fact every week she comes in here and does my hair. Thank you so much”. It is a clear example of someone who could have died badly and left the family with bitterness but who ended up dying well. I would predict, although I don’t know for sure, that the members of that family would feel that their life was in some curious way enriched by having had that intensely personal and open caring experience.
Ten Tips if your loved one or friend gets bad news about cancer
- Overcome your avoidance urges – visit the patient and discuss the cancer
- Don’t feel like you have to say the right things. If you don’t know what to say, be honest “I
wish I knew what to say”. And silence is just fine
- If you find yourself getting teary, don’t feel embarrassed. Tears are one of the best expressions of empathy.
- Be sensitive to spiritual issues – these are sensitive and often intense at this time.
- Avoid unhelpful phrases e.g. “I know how you feel”, “move on”, “time to pull yourself together”, “if only you hadn’t smoked” and “it could be worse.
- Do specific things to help e.g. shopping, helping with clinic visits, picking up their kids
from school, cooking meals.
- If you are struggling as a carer be willing to ask for help.
- Look after yourself. Take breaks that don’t involve discussing your loved one’s terminal
illness. And don’t feel guilty if you do so.
- Resist the urge to express your anticipatory grief by given false hope eg. “I heard on TV
about a new diet that cures cancer”, “I am sure the doctors have it wrong” and “just keep a
positive mental attitude and you will be healed”.
- Don’t be afraid to get family or grief counselling yourself.