Looking for distance carers in palliative care

As you may already know, I am currently doing a PhD at Oxford Brookes University. As part of my doctorate, I am conducting a research study exploring the characteristics, needs and experiences of carers at a distance in palliative care, and if and how they use the internet in their role as carers. At the moment, I am recruiting distance carers in palliative care who are willing to fill in a short online survey.

are you caring at a distance

So if you:

– Are at least 18 years old.

– Have a relative who is in a hospice or receiving palliative care at home.

– Live away from your ill relative (this could be a different town, or a different country), but still provide any kind of significant support.

Please consider participating in this study by filling in this online survey:

https://brookeshls.co1.qualtrics.com/SE/?SID=SV_57rCDTlSu2ZVrqR

You may also wish to visit the project’s Facebook page, or follow the twitter updates at @DistanceCarers.

 

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Sexual intimacy in palliative care

Over the last few days I have attended, and thoroughly enjoyed, the 10th Palliative Care Congress in Harrogate (UK). One of the best sessions that I attended during this conference was the masterclass Supporting sexual intimacy in palliative care, by community clinical nurse specialist in palliative care Dr Bridget Taylor and cancer nurse and psychosexual therapist Dr Isabel White. The following is my take on it.

Adam and Eve, sculpture by Ellen Kolk (1970).  Photo credit: Creative Commons by Tony Bowden

Adam and Eve, sculpture by Ellen Kolk (1970).
Photo credit: Creative Commons by Tony Bowden

This workshop highlighted the importance of sexuality and intimacy at the end of life, a topic that is often overlooked, because a) most cultures tend to be embarrassed to ask about it, and b) we seem to feel that when one is dying, intimacy is not that important. The session gave a very interesting overlook on the topic, and captured really well the different aspects of sexual intimacy: it is not just about intercourse, but, rather, a range of behaviours and emotions around intimacy, commitment and passion. This is known as the triangular theory of love (Sternberg, 1986).

I was particularly impressed by the respect and tender manner of Taylor & White, who used very powerful case studies to illustrate their arguments. My take-home message after this session was learning the importance of talking about sex. We all know how to talk about it when we have a cold: “I have a sore throat”, “My head hurts”, “I have a blocked nose”, “I feel drowsy”, “I need to sleep in order to feel better”, and so on. But when it comes to sexuality we often do not know how to talk about it, because we are not used to discussing it. It is more often than not a topic that only lives within ourselves. If we never talk about sex, even when things are fine, we will not have learnt a way to talk about it. This, in turn, will probably make it difficult to talk about it when problems arise, and very challenging to find a way to ask our patients about it.

We have to find our own language to talk about sex.

The authors of this workshop have kindly made the slides available through the PCC website.

Further reading:

Sternberg, R. J. (1986). A triangular theory of love. Psychological review93(2), 119.

Taylor, B. (2014). Experiences of sexuality and intimacy in terminal illness: A phenomenological studyPalliative medicine.

Would you let me die at home, dear?

The BMJ recently published a Personal View article by William Tosh, an anesthesiologist who shares his experience of looking after his father during his last days of life: Choosing to die at home can be tough on the family. In it, he describes the feelings of guilt that he and his close family felt whilst trying to support the best they could his father’s wishes to die at home. Tosh talks about how he struggled with feelings of guilt and resentment, having his home “invaded” with medical devices and staff. His father received excellent end of life care, however he questions if dying at home was the best option in that particular case. He explains how

feelings of panic […] began to surface: there was now nowhere for the family to escape.

Nikolay Bogdanov Belsky - Ultima voluntad

The Last Will, by Nikolay Bogdanov Belsky

I think Tosh has written a very brave letter, sharing his emotional roller coaster and exposing personal feelings in a sensitive manner. More often that we would like to admit, another physician’s account of experience is much more valued than a lay person’s similar account. In this sense, Tosh’s text is a very powerful one, since it brings to the arena a topic that it is not always easy: when the dying person’s wish to die at home is not completely shared by their relatives.

In the last decade or so, there has been a shift in palliative care, acknowledging that most people prefer to die at home, and hence teams and policy makers have been advocating for it. On the other hand, some literature has highlighted an underlying issue: the dying person’s views may not be the same as their carer’s views. In other words, I may want to die at home, but my family may not be prepared for it. This can bring feelings of personal inadequacy (am I a bad person? Don’t I love my father/mother/husband…?), guilt, isolation (it is not easy to talk about this) and resentment. Tosh’s letter illustrates this very well.

I do realise that I am exposing my own reactions to Tosh’s article, and of course my opinion is biased by my own experience of helping dying people and their relatives in a Mediterranean culture. Nonetheless, I think articles like his are a valuable addition and much needed, because they bring attention to a sensitive topic and encourage us researchers and clinicians to discuss it in the open. There are probably no easy answers: each family is a different world, and each disease is different experience.

What is your view?