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Archive for November, 2009

How do we help people at the end of their lives? Do we support them in a dignified and meaningful death, or provide ever more strenuous healthcare in order to prolong their lives?
In the US Healthcare Debate, CBS 60 Minutes recently weighed in with a segment about the cost of care in the last two months of life, which you can view here. Whilst cost is of course a very real problem in every healthcare system around the world, I believe the other factors covered in the program are more important. They revolve around facing up to the fact that we are all going to die, and actually thinking about what kind of death we would like to have. Is it one in an intensive care unit attached to machines, or a more supportive atmosphere at home or in a hospice – where death is seen as a natural process rather than a failure.
This debate is relevant to all countries and cultures, as death is surely one of the things we all have in common. The issues of unwanted intervention are far from exclusive to the US. Scottish actress Audrey Jenkinson described in her book Past Caring how her mother was resuscitated and taken to hospital in spite of having already expressed her wish to be allowed to die a natural death. Surely this is not what any of us want from our healthcare system. In other cases the person is no longer able to make decisions for themselves, and family members cling to unrealistic hope. This may be because they believe the person could be saved, in order to delay their grief, or simply because nobody has helped them look honestly at the truth of the matter.
Where can we look for a better model? One person who is championing better end-of-life care and support is Felicity Warner, who published her book Gentle Dying in 2008. She also trains ‘soul midwives’, who give the dying a chance to talk freely about their hopes and fears with someone who can support them. The soul midwife may also able to help families come to terms with their relative’s situation and honour that person’s last wishes. This can provide great comfort as the family moves into the grieving period. Families can play their part by ensuring they get the support they need in order to be strong in the face of loss.
With courage and a healthy debate, we can bring the subject of death out of the sidelines and honour it as a positive end which brings meaning to our time here.
For more end of life resources, visit Families Facing Cancer, and please share any additional helpful resources as a reply to this post.

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It was recently reported that morphine may encourage the spread of cancer – and yet this a drug which can be given to those who have the disease. See BBC News Article As a person who is not medically qualified, I do not have sufficient knowledge to determine how relevant this information is to people who have cancer in general, or any specific person’s cancer. And yet this kind of information is now available to me and every person searching desperately for anything to help themselves or a family member survive cancer and thrive in the future.
But what is the quality of the information? How can you judge? This is a study of whether morphine causes cancer to progress, and the results indicate that it could indeed do so. And yet those commenting on the results say both that further testing will be needed before clinical decisions change, and that there is a drug which could be given in addition to suppress the action. Once upon a time, not very long ago, this kind of information would be available to a few people who were qualified to understand the research and what it meant – and of course they would probably have their own differing opinions and viewpoints. Now such information is all too easy to get through the internet, though unless we have experience of medical language we will probably have to trust others to interpret it for us.
As a family member or supporter, what are you to do with this information if you come across it? Should you speak to the person who has cancer, counselling them to avoid morphine at all costs? (If I was working on getting better from cancer, I think I might find such advice a little wearing after a while, however well-intentioned.) Should you contact their doctors demanding to know whether the person has been given morphine and if so what will change now? Or possibly just throw up your hands and despair of ever understanding all the complicated information?
I think that the right approach is to make the most of the information available by following some research guidelines:

  1. As a friend or family member, only do research if the person who has cancer wants you to do so. Offer, but never insist or send information without permission.
  2. Preferably only one person should do (or at least co-ordinate) the research, and then feed back their findings to the person who has cancer. The person who has cancer can then decide what to ask the medical staff. If this is not possible, the person who has done the research should attend hospital appointments in order to ask any necessary questions. For instance it would be acceptable to ask if there are any alternatives if morphine is suggested.
  3. Question the source of information carefully. Is it unbiased? Who paid for studies, for instance? Was the research well designed (if you cannot tell, see what is being said about it by other parties)?
  4. Limit questions to the medical staff as much as possible to those which are relevant to the person’s current situation and treatment.
  5. Limit time spent researching and/or rely on a small number of trusted sources (the good ones will report on everything significant). Those trusted sources could include ones which are specific to the type and stage of cancer your friend or family member has.
  6. Remember that you can’t be expected to understand everything. As you do more research your level of understanding will probably grow.
  7. Look for positive stories as well as negative or worrisome information. It’s always good to have some hope.

You can find a short list of trusted cancer information websites by visiting Families Facing Cancer.

Please share your stories and feedback below. Has the internet provided information which helped (or didn’t help) your family? Does researching on the internet depress you, or help you feel more in control? Share these or any other thoughts by typing into the comment box. I’m looking forward to hearing from you.

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Childhood cancer is an emotive issue, which will make this post a little more emotional, too.
My son is very aware of the issue of cancer because of the work I do, and has been ever since I began writing my book, ‘Their Cancer – Your Journey’. It sometimes causes him to have fears for his own health, and I reassure him by letting him know how rare childhood cancers are.
So I was shocked yesterday when he came home and told me that a boy who was in his class last year at school is being treated for cancer. This had hit him especially hard because the boy shares the exact same birthday as him. It is still true that cancer in childhood is much less common than it is in adulthood, but the impact is so great when it does happen.
Today, my heart goes out to the families who are facing this struggle of childhood cancer. The fact that treatment and survival for cancer in children have improved greatly over the years is wonderful. Survival varies across the different types of cancers, and is very high for some (as high as 95% survival after 5 years for some cancers, and most who reach that 5 years have no further problems). But any threat to your child’s life is bound to produce great fear, and no survival rate less than 100% seems ok. Over 3 times as many children are seriously injured or die in traffic accidents each year than are diagnosed with cancer, but once the diagnosis is made the threat becomes real for your child.
If this nightmare is happening in your family, there are resources that can help, so I wanted to share a few of those here:

  • For information about cancer treatments and integrating complementary with orthodox medical treatment : CancerActive

  • Support for children and young people with cancer and their families : ClicSargent
  • Download a booklet answering first questions about a cancer diagnosis in your family : Families Facing Cancer
  • Information on cancer for teenagers : Teen Info on Cancer

  • Holidays for young people in the UK affected by cancer or other diseases : Youth Cancer Trust

If you need any further help, or want to share any advice for others, do email me, visit our forum or post in the comments below.

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