Death and Dying

This week in lectures and tutorials we have been learning about death and dying.

I know some may ask, what is there to learn? But the subject of death is still difficult for a lot of people.  So much so that our lecturers put the information on our university portal page and also sent a questionnaire out to us to send to our tutors so that all parties are fully informed about our experiences and about what to expect.  We were also told at the beginning of lectures that if anyone feels that they need to step out then to not be afraid to do so. This may be because some may have recently experienced a death or may be going through something that is still quite raw to them.

In nursing, we unfortunately may see a lot more of death than some other careers.  It is very important therefore, that you know how to cope with this.  As a professional, you are expected to be professional, to be knowledgeable and to be there for the patient and their families.  It is okay to shed a tear or two with the patient's family, it is okay to have that sense of empathy. I don't think, however, that it is okay that you sit there and become so distraught that you cannot help them.  Do that in private.  However, as a nurse you are expected to be able to reflect on the situation and use that to help forward your practice. With the subject of death, this may be even more important.  You need to know how you will cope as a person, and as a professional.

The first time you as a student, or even as a qualified nurse, deal with the death of a patient, it will be hard.  Nursing students are always worried about 'last offices' that you may not cope or that you just don't feel comfortable. This is okay.  Talk to your mentor, your personal tutor, even family (bearing in mind confidentiality).  This is what they are there for.  It may not be easy, but it is something you will probably come across. Some nurses more than others, depending on area of work, will deal with this more frequently.   However, it never gets easier.

I am lucky enough that even when i worked in palliative care, i never personally witnessed a death.  I was always somehow, just around the corner, either arriving or leaving! I am interested though to see what happens after death and how other nurses deal with this.  On my last placement i was told that parents would often ask for help in taking photos of the deceased child, taking handprints and footprints and asking for help with the paperwork.  They may want to take the child home, they may not.  It all comes down to personal preference.  And as a nurse that is something you have to support the family with.

In class, we learned about end of life care, palliative care and how to raise the topic of end of life wishes.  There is no right way of doing this, so working with some experienced when you do come across your first death may help immensely.  As a student, it is a good opportunity to learn.  On the other hand, as a student you can step away and say you are not comfortable dealing with that at that present moment in time.  

Dying Matters is a good website to look around for help and information on the topic.  

When it comes to learning disabilities, there are different ways of helping your patients talk about and learn about death and dying.  There are different websites out there that can help as well as different organisations. 

PCPLD

Foundation for PWLD

The above links are just two websites i have come across when looking at how to communicate death and dying to people with learning disabilities.  It all comes down to that individual and their level of comprehension and understanding.  They may only want to talk to a family member or someone in a position of authority such as yourself.  It really comes down to knowing your patient and their needs and wants.  It is always worth thinking 'outside the box' when it comes to learning disabilities.  

This factsheet by Mencap is worth a read if you are looking at communicating death and dying to someone with a learning disability.  

Shockingly enough, there is not a lot of information or facilities when it comes to people with learning disabilities needing end of life or palliative care.  Many will be looked after by their family, or if they no longer have family around, then this will be amongst the elderly or in a general hospice.  These may be the perfect places for them, however, it may not be.  They may be frightened or scared or anxious.  The staff may not have the correct knowledge and/or training to help them in looking after someone with a learning disability that is palliative.  So this is a niche that really needs opened up.  So if you were looking at somewhere to make a difference when you qualify, this is it! 

Overall, don't be afraid to talk about death and dying.  It is not taboo. It is not scary. And it wont go away.  It is so important to let relatives know of your wishes, for example, when it comes to organ donation.  So just take a step back and think of those with a learning disability.  Do their relatives know? Does the individual know? Are they fully informed? When it does come to their end of life care, who will consent for them if they cannot? Who will make those tough decisions? 

There is a lot to think about when it comes to death and dying in relation to those with learning disabilities.  So all i can ask is this, 

Please be aware of your own knowledge and limitations. Then try to improve that.  As that person with learning disabilities may not be able to and will be counting on you to do the right thing for them at their most vulnerable point in their life.  Never go beyond what you know you can do. Always work within your limits. Ask for help if you need it. And be proud.  

You made a difference to that person in their last moments.  And that is the most privileged position to be in.