Death in a care home

I am an advocate for Dying Matters. I believe that when your loved one is nearing the end of their life, you and your family should be told about the choices for their care. It is not an easy conversation to have.

I recently heard about a family who were mourning the loss of their mother, just before Mothering Sunday. She was an old lady with dementia, living in a care home, with serious underlying medical problems. But she was well cared for and her family loved her and visited her several times a week.

When the family received a phone call late one night, they were understandably concerned. The GP had been called to the care home. It was not her usual doctor, but there should have been a chart and notes on her condition. Apparently there was not. The old lady was transferred to a nearby hospital, where the consultant said there was nothing he could do for her, and returned her to the care home.

Twelve hours later, having never regained consciousness, she passed away, with her family at her side.

Her family are questioning the decision made by the hospital consultant, to return their mother to the care home to die. They are questioning whether treatment should have been started, to prolong their mother's life. No doubt these questions will be answered and the family will be able to continue their grieving.

But, what if the care home staff had had the confidence to talk to the family, to talk them through the options. If the care home staff weren't qualified to do so, what about the GP? If the family had been able to understand that their mother had already begun her final journey, for death sometimes comes slowly to the frail, surely they would have been better equipped to deal with her passing.

Another family, left in tears for a loved one, grieving for things not said or done.

Close one door and another one opens

When Mom was diagnosed I was angry. So angry that her retirement had been ripped apart so cruelly. So angry that her life would be cut short and there was nothing we could do about it. Angry that my job doing something I loved, was so unrewarding and in such a toxic environment that I didn't tell anyone that my beloved mother was dying.

I struggled on for six months, juggling work and hospital appointments, crisis after chemotherapy crisis, as well as keeping house, being a friend and holding the family together. I know now that this is what families with cancer are dealing with on a daily basis, but at the time, I felt as though I was completely on my own. And in part, this prompted me to start the blog and write about my raw emotions as Mom suffered, and died from lung cancer.

When we knew that Mom's time was almost up, I gave notice and asked to be released early from my contract. It was a very difficult decision for me. I had worked so hard achieving my PhD, and had completed two pieces of work to be published in scientific journals. Despite being assured that my work would be supported in the future, I was devastated when it became clear that there was to be no future for me in science.

My last day of work was bitter-sweet as I said my goodbyes, knowing that I was not leaving to go on to bigger and better things, but rather to nurse my dying mother at home for the last weeks of her life. I have no regrets about my decision. It was the right thing to do. And I have rebuilt a career in writing, talking about end-of-life care options, promoting science, working hard to build a portfolio. I can honestly say that I have found my niche, and I love what I'm doing.

So it was a bit of a shock when I bumped into a senior colleague at the gym on Tuesday night. I haven't seen her 18 months, and for a split second I wasn't going to greet her. But I did say hello and she was surprised to see me. Of course, she asked what I'm doing now. As if she didn't know that she was in part responsible for closing the doors of mainstream research to me. I found myself talking down what I do, as if my value is less now because I'm no longer in academic science. And that really upset me.

I have resolved now to complete the writing of the manuscripts for the research I carried out, but instead of publishing in a scientific journal I will publish on my blog, in a way that everyone will be able to understand the context and contribution of the science to our lives. I hope that this will bring closure to that part of my life, and more opportunities in other areas.

I'm a member of the Dying Matters community.

I blog at talkhealth.

Funding cancer research or end-of-life care or both?

Prompted by two new tweeters in my timeline, I've written a comment about research funding and the difficulties faced by scientists in making choices about novel therapies for cancer. The post can be found on my science blog To science and beyond, but I wanted to mention it here, as it covers aspects of end-of-life care and dying matters, both of which are very important to me.

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.

This post has also appeared on the talkhealth Blog.

Your choice

Sometimes, when things get a bit tough, it is easy to forget that we have a choice. We have a choice about where and how we die. With a diagnosis of terminal illness, we are given plenty of time to consider our options, yet still, patients and their families are not offered the choice. The choice of whether to die at home, hospice or in hospital.

In our area, Surrey, I read that the authorities are letting terminally ill patients down at the end of their lives. They are not being offered a choice, clinicians are still reluctant to engage in these discussions. We were fortunate to know what we wanted, and who to ask to get it. And everyone was very obliging, but what if we hadn't known? What would Mom's death have been like then?

Surrey was in the lowest 20% of primary care givers in England for discussions between hospital care and peoples' preferences about where they want to die. And overall quality of end of life care was scored at just 40.5%, which I find shocking (reported in Surrey Advertiser  13 July 2012).

In response to the article, a spokesperson for Central Surrey Health wrote a letter to the editor (Surrey Advertiser 27 July 2012) saying that in the Epsom area in the last six months, district and community nursing teams had enabled 80% of patients to die in the place of their choice, usually at home. This is heartening and, in our experience, these nurses are fabulous at their jobs.

And then there was the sad letter from a concerned friend, who had lost someone special in hospital (Surrey Advertiser 13 July 2012). The patient had suffered a stroke and was critically ill. The clinical team had implemented the Liverpool Care Pathway, a series of clinical observations, actions and discussions with family, which ensures that the patient will have a dignified, comfortable death. There is no further intervention or treatment. The friend was so unhappy with this approach, and felt that the patient's illness should have been allowed to continue, with at the very least nourishment provided. Now, if only someone on the nursing or clinical team had taken the time to talk to the friend, her anguish could have been soothed and she could have been supportive.

I firmly support the right of everyone to have the choice. 

For more information and support to talk about dying, see Dying Matters.

If you have time, please pop over to #BlogFlash2012, where you will find the link to many other contributors to a creative writing challenge for August.

Get your ducks in a row

That's what Mom always said. She was a wise woman, right to the end. And her clarity and comprehension of her situation helped us to help her. My wonderful husband was pro-active in getting Mom to decide where she wanted to die, and the GP helped us achieve this. I believe that this was absolutely the right way for Mom to go, but it took our family to raise the question with the doctor and push for the help we needed.

So, I was interested in the article today which says GPs should raise the question of end-of-life care for the elderly. It's not just the elderly, however. These discussions should happen with people diagnosed with a terminal illness or even those conditions which can leave your loved one with no quality of life, like heart failure.

I had a frustrating and upsetting encounter with someone at the gym this week. A mutual friend was diagnosed last summer with advanced lung cancer. He is in hospital at the moment, and the reports we are getting are not encouraging. He has a close family member looking after him, and I don't want to upset her, but it seems to me that nobody has had the courage to ask him what he wants. He may not know, he may not know what his options are, but being obstructive is unhelpful. Edit: RIP, dear friend.

But, it's still a taboo subject to ask someone how they want to die. It takes a lot of courage on both sides, and it's a topic I passionately believe in. I know it's a difficult conversation to initiate, and I wish I hadn't had to do it for Mom. I hope it doesn't happen to you, but if it does happen, be brave. It does make a difference, and getting things in order is very important for dying in peace.

This blog has covered this topic previously if you would like to read more here. Or go to the Dignity in Dying website for more information.


Photo credit.

Follow @Shackleford_LB

Let's talk about dying

I have been looking at other cancer blogs and forums and have noticed something quite disappointing. They are filled (quite rightly) with inspirational survivor stories and battle cries, but are lacking in discussions on death and dying. The two largest cancer support organisations have produced practical booklets but there are few opportunities to open up anonymously about how you are feeling following a bereavement. In our case, the GP says 'a significant bereavement'.

When I first started talking and writing about Mom's death from cancer I was amazed at how many people wanted to talk to me. Many had questions they had been too afraid to ask, too afraid of the answers. I had encouraging feedback too from a letter I published in the local newspaper, in praise of local end of life care services in our area.

I set about writing this blog, to document my own thoughts and to provide a forum for other families. The thing is, we still don't like to talk about death. And we sure as heck don't like to think about our own mortality. Cancer is a different disease for everyone but the one thing that all cancer patients have in common is having to confront their mortality. And that is devastating.

So let's talk about dying, it helps us prepare and it can ease the pain of bereavement. Whilst there are incredible success stories in cancer treatment, many people still die from cancer. It would be wrong to avoid talking about death in order to not upset those brave and hopeful people going through treatment, but for many people there will come a time when the brave thing to do is to talk about dying.

My thoughts are with you all.

Follow @Shackleford_LB