Expectations in End of Life Care

Cathy Rentzenbrink describes quite openly in The Last Act of Love (1) that we would go above and beyond the call of duty to hold on to our loved ones, we would do whatever is necessary despite the outcome. Neurosurgeon Henry Marsh (2) explains that sometimes the act of saving lives in such catastrophic circumstances is more devastating in the long run than if they were to die without intervention in the first place, something that Cathy herself eventually had to deal with. It is only as time passes that we may realise the quality of life has deteriorated to the point that the patient begins to accept they’ve reached the end of what they’re willing to live with. Unless put into that circumstance, my own personal opinion is that many would go above and beyond the call of duty to save a life, no matter the outcome.

In The Way We Die Now, Seamus O’Mahony (3) confronts our relationship with death and how that has changed in recent centuries. At one point, it was championed to die in pain as if a hero, but now we avoid the topic and most would confess they would rather be asleep or unconscious through their final moments of life. Having witnessed a loved one dying it fills me with contention on what we should expect if a progressive illness reaches its end; on the one hand of course you don’t want to suffer but on the other, is it really avoidable to ensure that we don’t feel the trauma of our anatomical functions giving up the ghost?

Most General Practitioners or Palliative Healthcare Practitioners want to achieve what they term as a ‘good death’ (4) but when trying to look into what this actually constitutes, it is rather vague. The guidelines suggest we should be open and informative as well as to treat with dignity but plenty of research suggests that even medical professionals find it unethical to approach the difficult conversation of death with their patients (5). If those looking after us aren’t willing to broach a challenging topic, then how can we achieve a good death if in fact no one is inclined to be open and honest in such fragile circumstances.

Seamus O’Mahony also challenges that those who are facing end of life care in a hospital environment are essentially left to do so with little dignity because essentially no life-saving can be achieved (6). Meanwhile for hospices, though some achieve exceptional results, there are many that appear to turn their cheeks to illnesses (7) that may not be as high profile as others. This leaves many vulnerable in the community on an essentially flawed 111 community service whilst syringe drivers (8) are left to do the work of a healthcare professional. Death should at least be calm if nothing else, but it seems as if we’re failing that quite dramatically by not confronting the root of end of life care.

It feels as if no one is brave enough to face the topic of death, so how can we have expectations other than what we concoct within our own imagination? That’s why the Death Café (9) and Dying Matters Awareness Week (10) was introduced, to bridge this uncomfortable gap and to introduce the subject of death into our everyday conversation. Our passing is a fact of life yet as the years have gone by it’s become a taboo that should be avoided no matter what quality of life we have been left with. This inevitably leaves the thousands of people in the UK dealing with terminal illnesses isolated because they feel unable to speak openly about their fears or their wishes for end of life care, and many families become simply unprepared spending the final hours with their loved ones.

When dealing with a progressive illness there should be some harsh truths introduced that in the long run will help come to terms with the very nature of death. Too often we are a nation that bury our heads in the sand but become outraged when our own expectations aren’t met. If a person introduces a Do Not Resuscitate order should we then fight to meet their needs in death? Absolutely. If a person is facing end of life care should they be left abandoned at home or on a hospital side ward? Absolutely not. These questions bring strong opinion, but too many are turning the other cheek than to speak up until it’s too late.

We are not immortal beings and though on average we are living for far many more years than before, the Grim Reaper will always return. Instead of treating him as an enemy, maybe it’s time we learn to accept him as an acquaintance in our life and begin to embrace the fact that our time will come. And when the time comes, we are prepared so that in some essence we too can achieve this notion of a ‘good death’.

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