Do doctors talk about dying?

Many people think that having a conversation about dying is reserved for those with cancer. We tend to forget that there are other, often chronic, illness such as heart failure, which also need careful management of the expectations of end-of-life care. Although there have been so many advances in heart disease, people do still die from it.

Since I started work as practice manager for a cardiologist, I have had the privilege to learn about some of the patients' stories. These patients often face lengthy illnesses, frequent hospital visits and invasive procedures. Sometimes, the heart is too damaged and nothing more can be done.

The specialist I work for feels strongly that patients and their families should have as much time as possible to come to terms with the fact that they are entering the last months of life. It isn't always possible to give an exact time scale, which is why the conversation must be  sensitively timed. He also tells patients that he speaks from personal experience, because until you have experienced the loss of someone very close to you, you cannot possibly understand the turmoil of emotions that goes with planning for the end of someone's life.

Enlightened families ask questions about how to access extra care, register a do not resuscitate order, and make plans for the smooth handling of their affairs. If your doctor (specialist or GP) isn't having that conversation with you and your family, please make sure you initiate it, because doctors like the rest of us, feel nervous talking about death. After all, they studied medicine to preserve life.

A conversation about dying shouldn't be about the end, it is about planning for the end. In many cases, there is still plenty of living to do, and families should strive to do this, laying down memories for the future.

Published in support of Dying Matters Awareness Week.

Who do you turn to when your Mum is dying?

I have very mixed feelings about the support we were offered towards the end of Mom's life. Everyone was lovely and kind to Mom, but nobody would talk about her dying. Even the Macmillan nurse wouldn't broach the subject because she said that Mom wasn't ready to talk about it. I remember that day very clearly. Even I could see that Mom had weeks to live, the tumours were growing out her back, they had all but blinded her and just about paralysed her. The community nurses came and went, leaving Dad to do most things. The GP cried a lot. 

I had to do something so I gave up my job and went in search of a conversation - about dying. I found it on the internet, with strangers, who having gone through the painful loss of a loved one, wanted to, perhaps needed to, share their experiences.

Day by day that late summer, as I sat with Mom, we talked about her choices.  I asked Mom to think about where she wanted to die. She wanted to be at home so we invited the GP to complete a Do Not Resuscitate form for her file. This would stop the paramedics from taking Mom to hospital, should Dad panic in the middle of the night.

Mom didn't want to go in to hospice, so the District Nurse at the GP surgery helped us to obtain a hospital bed, commode, portable oxygen and carers to assist with bathing and dressing. We made Mom comfortable at home and settled into a routine.

I noticed little things in the last week of Mom's life. Tinges of blue in her fingers and toes, dry skin, a darkness behind her eyes. I urged the Community Nurse who called on us that morning to talk to Dad, who was still in denial. As she went through the Liverpool Care Pathway with him, the horror began to sink in. I think he must have had a quiet word with Mom later that day, a word between lovers, saying good-bye. Mom's death came peacefully not long after that.

In the days that followed, I held Dad's hand as we talked about Mom's funeral wishes. She had been very clear with me about the service, the hymns and readings, and had even written a poem.

It isn't easy facing death, but it does help to talk about it. I hope that by sharing our experience, we might be able to help someone else.

Published in support of Dying Matters Awareness Week.

Don't sweat the small stuff

I have changed. I used to be a worry-pot. I used to get annoyed at the slightest thing. I could get in a real temper. But that was before Mom became ill and died. A life-changing event. I wish I could bring her back, I still miss her every day. But her illness, and death at no age at all, made me see that some things just aren't worth worrying about.

I will always be a stickler for detail, for getting things right. But I am much more in tune with the natural rhythm of life now. The usual up's and down's come and go, and I am calm. Mom's illness showed me how to get the best out of life, out of other people, and out of myself.

When faced with an awful family drama, I had no choice but to go along with the disease process, to give myself up to it, and to be there for Mom, no matter what. Nothing in my life at the moment presents as much fear as Mom's illness did. Somehow, I found the strength to cope with that. 

Have faith and confidence in your inner strength. Deal with the difficult stuff, but don't sweat the small stuff.

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Could all the money in the world find a cure for cancer?

I honestly think the short answer to that is no, but I would love to be proved wrong. 

Funding shortfall

There are any number of high-profile cancer research campaigns, all begging and pleading for funding. The UK medical research funding bodies are really stretched at the moment. Their funding was cut in the first round of austerity measures back in 2009. At the time, research scientists were warned that as much as 20% would be cut from research budgets, and that the remaining funding would be more focussed on translational research, that is, research which would yield applications in medicine, technology, engineering, for example. This meant that much basic science research into novel therapies was cut short. The EU-funded project I worked on for 4 years, looking at a novel gene implicated in cardiovascular disease risk, was cut off from the next funding round. The shortfall in funding vital research will have to be made up from private funding, legacies and public awareness campaigns. So I am always interested and supportive when I hear about anyone embarking on this sort of fundraising for projects near to their hearts. Because behind every campaign is a passion, a love, a loss. 

New campaigns

Two new campaigns have Twittered into my timeline. Two new lines of research into novel therapies for cancer. One is a campaign for more funding for immunotherapy by Ruth Stavric, the other is iCancer, campaigning for more funding for a cancer-busting virus. I have not read the preliminary research on which either of these campaigns is based, so I would urge cancer patients and their families to approach with caution. And in the UK (to my knowledge), these therapies are not available, apart from a small number of pilot study immunotherapy clinical trials. 

Cost

Yes, cost is an issue. The stats for cancer care are astonishing, and an ageing population will present with more cancers. The health authorities are already facing increased detection rates of cancer in patients over 65 years, across all cancers. There is no doubt that a widespread roll-out of novel therapies across the NHS is never going to happen. Indeed, it is rare, even for cancer care of patients who can pay for it privately, to deviate from the standard treatment at the moment. Pharmaceutical trials do go ahead, but the clinical criteria for entering many of these trials limit the number of patients who can enter the trial. There is also a vast minefield of medical ethics to consider, on top of constant monitoring, blood tests, scans and the like. Which goes some way to explaining the lag behind research discoveries.

A bit about the science

The science behind cancer is very complex. On a molecular level the initiator of a rogue cancer cell can vary from a genetic mutation to a break in a chromosome, or a response to an environmental stimulus (like a cold, or a chemical toxin). That is why a 'one size fits all' approach to cancer treatment is unlikely to be found. Breakthroughs in cancer research in the 1990s discovered the bcr1 gene, tamoxifen responsive breast cancer, the bcr-abl cluster in leukaemia, and clinicians have been successfully using this knowledge for a number of years. So it's a long term project. And best results across all cancers will most likely come from a number of approaches, some tailored to individual genetic make-up, some tailored to the individual immuno-regulation response, some using tried and tested chemotherapeutic agents, and some based on faith and alternative therapies. Many cancer patients will benefit from a multi-approach. Many will not.

Living with Mom's cancer

My Mom died of cancer last year. She was only 66 years old. She had small cell lung cancer, a very aggressive form of cancer. Without first stage palliative chemotherapy, she would have been dead within 4 months of her diagnosis. As it was, chemotherapy gave her another 5 months with us. She opted to stop chemo after 4 months because it made her too ill to spend time with her friends, family and grandchildren. And she died a dignified, peaceful death at home. You can read about Mom's story and our positive approach to Mom's cancer. Mom's cancer was complex, made up of different cell types. These small cells spread throughout Mom's lungs and into her spine and other organs. Nothing could have stopped the relentless march of those cells.

And I'm reminded at this time, of two other inspirational women. Ellie died earlier this year, having followed every line of treatment she could, to fight her breast cancer. Kris started CoppaFeel! to promote awareness of breast cancer in young women and is in part behind the new campaign of breast awareness. 

Dying matters

Despite their best efforts, oncologists cannot save every cancer patient. Whilst I applaud all efforts at new discoveries, fundraising and the brave people who take part in clinical trials, people still die from cancer. I would like to see more funding for end-of-life care. More funding to train more people to talk about dying. Because when cancer has run its course, your loved one deserves the best. A peaceful, pain-free death. 

For more information and support to talk about dying, see Dying Matters. Living with Mom's cancer is a member of the Dying Matters community.

A work in progress

I am not yet complete. I have a lot to learn. As I get older, I am enjoying the learning a lot more than when I was younger and wanted to know everything. I am not afraid to fail, but I do love the small successes which more and more are all my own work.

I must admit, I did feel a twinge of envy at the established Bloggers and Tweeters, safe and smug in their Blog- and Twitter-doms, kings and queens of all they survey. However, as I get better at blogging and braver with tweeting, I am feeling the love.

It's all about the networking. Building a delicate thread of having something in common. Perhaps the topic of my blog is too painful for people to embrace, but I hope that it will provide support to some. In the meantime, I have expanded my stories, telling tales about village life from the dog walker's point of view, and writing more sensible stuff about science in modern life. 

I hope that by reaching out to different groups of people I will be able to spread the word about choices in end-of-life care, a one-woman campaign. A work in progress, much like my new veggie patch - I must start somewhere.

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