Is home the best place to die?

Readers' comments (27)

• 

  DH Agent - as if ! | 25-Jan-2012 11:53 am

  'Is home the best place to die?'
  
  Explain the likely prognosis of 'dying' to the patient, in terms of 'what it will probably feel like'. Explain any different treatment and support options, regarding differences between different locations.
  
  Then ask the patient what he or she wants to do: you then have the 'best available' answer to the question.
  
  And allow patient's to change their choices, if they wish to, as their own individual experience of dying increases as they 'die'.

  Unsuitable or offensive?

• Anonymous | 25-Jan-2012 12:10 pm

  I think this is one of the questions that we should ask our patients, certainly those who are in any palliative care situation, not just cancer patients.
  
  I think that nurses are sometimes afraid of mentioning death to patients when we talk to them in assessments etc. But I think that older patients quite often want to talk about death and discuss their wishes and needs as the time approaches and this is often ignored by nurses because of this fear.
  
  I worked as an elderly and palliative care specialist practitioner and whilst developing the role it became quite apparent that death, whilst not taking up a whole conversation, is a topic that does need dicussion with the patients and their families.
  
  I know I would like to make the decision when my time comes.
  
  An old palliative care patient of mine once said, "You'll have seen people dying many times and that gives me faith in you knowing what you are doing and talking about. But I only get one chance of getting this right and that scares me".
  
  Reassurance that there is nothing set in stone and that patients can change their mind as the are dying quite often helps alay some of the fears that patients have.

  Unsuitable or offensive?

• Anonymous | 25-Jan-2012 12:30 pm

  the best place is surely according to personal and patient preference.

  Unsuitable or offensive?

• Anonymous | 25-Jan-2012 12:33 pm

  Anonymous | 25-Jan-2012 12:30 pm
  I would also add to my comment that it depends on the patient's symptoms and level of equipment and support they have needed and its availability and on their home and personal circumstances.

  Unsuitable or offensive?

• 

  DH Agent - as if ! | 28-Jan-2012 11:50 am

  Anonymous | 25-Jan-2012 12:10 pm
  
  I like your post - in particular this is crucial to 'understanding' of dying:
  
  'An old palliative care patient of mine once said, "You'll have seen people dying many times and that gives me faith in you knowing what you are doing and talking about. But I only get one chance of getting this right and that scares me".'
  
  As is what follows from it, the point you mentioned that patients can change their minds.
  
  But you were a specialist in palliative care - but I think many nurses, especially young and inexperienced nurses who have no great experience of palliative care and who have not been involved when their own relatives have been dying, simply do not understand 'dying' as well as you do.
  
  

  Unsuitable or offensive?

• Anonymous | 28-Jan-2012 1:24 pm

  michael stone | 28-Jan-2012 11:50 am
  
  damning nurses again!
  
  you might as well accept that none of us, even those of us with long years in the profession, who have supported many dying patients and their relatives, simply do not understand and don't know their job that they have been trained to do and have gathered experience in!

  Unsuitable or offensive?

• Anonymous | 28-Jan-2012 11:23 pm

  Attention Michael Stone
  
  why do you not write an article of your own where you can put forward all your issues which are bothering you, and with your specific questions and then see if you can get the more precise answers you are looking for, for once and for all.

  Unsuitable or offensive?

• Anonymous | 29-Jan-2012 2:18 pm

  actually, i think michael may have identified a training need. the first time most of my colleagues, including the experienced ones, hear of the liverpool care pathway is when i mention it. i'm sure my trust isn't the only one.

  Unsuitable or offensive?

• Anonymous | 29-Jan-2012 3:17 pm

  the LCP is not the only method and may not even be the best one and not all hc institutions choose to use it.

  Unsuitable or offensive?

• Anonymous | 29-Jan-2012 3:39 pm

  As a nurse - and a patient with a life-threatening illness - I can quite clearly state that my first instinct on hearing the diagnosis was to state unequivovally to my husband that I wanted to die at home with people who love me. The difficulty for patients is that, no matter how experienced or caring the nuises, they are not their family and they do not 'love'[ them in the way that their families do. They may be very caring and concerned to do their best but it simply cannot be the same. This does not deny their abilities or skills as nurses but highlights their limitations by the very nature of who they are. It is an unavoidable fact not a criticism of who and what they are.
  
  Secondly, as my husband points out, the time leading up to the patient's death is considerably less stressful because of the problems of being at the bedside for long and unpredictable periods. And he speaks from experience having supported his first wife through a similar illness at home and had a son die in hospital.

  Unsuitable or offensive?

• Anonymous | 29-Jan-2012 9:18 pm

  Anonymous | 28-Jan-2012 1:24 pm and Anonymous | 28-Jan-2012 11:23 pm
  
  
  I can't see where MS is damning nurses at all. I guess you must be the 'have-a -go' nurses at MS on all these posts. Anonymous | 29-Jan-2012 2:18 pm - this response was more appropriate.
  
  It is a sensitive subject that not all nurses feel comfortable with. Thank you Anonymous | 29-Jan-2012 3:39 pm for a telling us from your own personal perspective.

  Unsuitable or offensive?

• Anonymous | 30-Jan-2012 9:03 am

  I think that several people above are being overly sensitive when it comes to Michael's comments of which I totally agree. In my experience all members of the multidisciplinary team often have an issue with using the 'death' word with patients - the reasons nurses get singled out is because we are with patients the most, and therefore have more opportunities than most of the team to discuss this incredibly important issue.
  Too many people think that by talking about dying with a patient will cause distress and loss of hope, when actually patients are often wanting to talk about this but want the health care professional to initiate the conversation for them.
  As a final point, the LCP is an incredibly useful tool when it is used effectiveley by all involved.

  Unsuitable or offensive?

• Anonymous | 30-Jan-2012 2:19 pm

  In the US we have this terrible problem of not having enough resources for all of our citizens. It is sad when a terminally ill person 90 years of age is slipping away, but it is not a tragedy. Family often calls the ambulance and the patient dies in the hospital after several hours of multiple unnecessary indignities. No matter how 'taboo,' we need to have these discussions with our patients and make sure their family understands their decision to die at home.

  Unsuitable or offensive?

• 

  DH Agent - as if ! | 30-Jan-2012 2:37 pm

  Sometime late last year, I was sent a copy of a paper by some doctors, who in essence were asking ‘should the frail elderly be required to opt-in to attempted resuscitation, and to be assumed to have opted out ?’.
  
  I sent this out to about 140 ‘relevant people’ and got 12 replies, from assorted professions. Interesting excerpts from the replies included:
  
  ‘Shouldn't the default position be to retain human life and only make the decision not to do CPR after informed discussions with the person/and their relatives or Health and Welfare Lasting power of Attorneys if applicable . In my experience some patients do welcome the choice to decide following discussion with a doctor for a DNAR , they view their general quality of life as so poor its is a realtively easy choice for them . However I have generally found that it is very difficult for Doctors to have this discussion and they tend to obscure the information with medical jargon, talk around the subject ,and often in such a short timescale that it often leaves the patient wondering exactly what the purpose of the discussion actually was , It is only after, perhaps with the support of another professional , trusted nurse etc that they actually come to terms with the questions / discussion / prognosis etc. Just because it is difficult for doctors to summarize a persons prognosis / condition and effect of the conditions on their daily life and ask a persons opinion on DNAR doesn't mean that it should be changed.’ (Social worker working primarily with the elderly/ terminally ill).
  
  ‘The vast majority of the patients on my ward are frail, with multiple comorbidities, and often have cognitive impairment. It is rarely appropriate to attempt CPR, and the onus is on the medical team to make patients 'not for resuscitation'. Sometimes we have confrontational discussions with relatives who feel that we are being ageist / giving up on treating their relative etc. These discussions can be very burdensome to the family, who may feel that they are required to make a life or death decision about their loved one, even when it is explained to them that it is ultimately a medical decision about an intervention that will be both traumatic, undignified and almost certainly unsuccessful. These discussions can detract from the actual care and treatment that we are giving, placing undue emphasis on a 'formality' that we have to comply with.’ (I work as a consultant in eldercare in a district general hospital)
  
  ‘I have very strong views on the need to discuss resus status with patients as part of their admission. I have been witness to so many problems stemming from lack of clarity over resuscitation status over the years.
  On the surface Opt in sounds great. As a nurse I got so upset and frustrated at the amount of patients being inappropriately resuscitated; prolonging a painful death and what I thought lacked dignity in death.
  I would always try and coordinate Drs to speak with families and patients (if able) about the resus status. Some Doctors are better than others at communication over this issue. A decision can often depend on the way people are guided and counselled over this matter.
  Some families think CPR will work a miracle and always bring their loved ones back to a healthy life- which sadly is not the case. It is a difficult subject to speak about’ (Patient Advice & Liaison Manager Bereavement Manager Prior to this worked as RN on CCU and A/E)
  
  ‘Thanks for these. I think my final comment of the population not being open and able to talk about EoLC/CRP is the underlying issue.
  We as a group have lost the plot – death will occur for us all. However is the process of death and what we would like to occur during and following death that needs to be discussed. The End of Life strategy encourages HCP’s to complete an end of life care plan but in fact Nurses are often guilty and feel unable to complete them and so not do them.
  They quote that they feel unprepared to do these that they have difficulty in identifying the stages associated with the end of life and they themselves struggle with the whole issue of talking about death.
  As I say to friends the Victorians talked all the time about death and mourned very outwardly but they did not talk about sex. Today we talk insistently about sex and nothing about death, people will cross the road syndrome occurs and the medical professions have for many years told people they can cure them. It’s not really surprising that people demand treatment, surgery, expensive medicine and then CPR. …….. Open discussion is the key’ (MSc RGN CSP Manager St John Ambulance)
  
  
  
  

  Unsuitable or offensive?

• 

  DH Agent - as if ! | 30-Jan-2012 2:53 pm

  As 'behaviour around death' is both my obsession and hobby, I can ramble on for hours ! But, a few things which I think are true:
  
  Different individuals, who are each dying from a similar medical condition, can nevertheless each have different individual experiences of 'the process of dying' because everyone has their own set of beliefs, tolerance balances, and wider-life considerations, values and objectives. The NHS, and especially CPR/VoD policies, are confusing clincal diagnoses with 'the patient experience of a clinical condition'.
  
  It is always to some extent, and a greater extent than 'trivial', damaging psychologically when someone you love dies. The experience of 'a death' must be different when you are a relative, compared to when you are a clinician. Because a relative cannot 'be detached' a relative suffers at least some level of 'mental trauma' for a death, but clinicians in my opinion could not repeatedly allow the same level of 'empathic involvement' because otherwise it would be overwhelmingly mentally damaging. Clinicians need to be detached - relatives need to be attached, and that makes it very different for the two.
  
  This is true for me, I can't state that is true for most relatives, but I think it probably is. As soon as you know that someone you love is going to die, your objective is to make sure that your loved one's own choices about 'how I'm going to die' are followed. So 'at home in pain' would outrank 'in hospital and not in pain', if that is what your dad had made clear to you. I think relatives simply support the choices of their loved ones, but clinicians are much more focused on 'is best clinical practice being followed here', and 'am I following the rules ?'. So clinicans consider things like 'is there adequate community care ?' but although I want adequate community care, my focus is on 'are you doing what the patient tells you to ?'.

  Unsuitable or offensive?

• 

  Steve Williams | 1-Feb-2012 2:40 pm

  MS Tl:dnr

  Unsuitable or offensive?

• Anonymous | 1-Feb-2012 3:02 pm

  S. Williams
  
  please could you write in plain English so that others understand? thank you.

  Unsuitable or offensive?

• Anonymous | 2-Feb-2012 10:42 am

  Death is part of living. So why not plan for it? We plan for all other aspects in our life. The patient will die with peace of mind, and knowing that they achieved their goals will take some of the burden off their family and health care professionals.
  
  There is no need for anyone to die in pain. Having worked in the community with many palliative care patients, I can assure non nurse readers or nurses inexperienced in this area that for our patients, pain was relieved with analgesia, other symptoms were managed according to palliative care guidelines. We worked closely with MacMillan nurses and GPs to ensure that our patients were comfortable and not in distress. I can recall attendeding study days and receiving on the job training which ensured that we provided research based, quality palliative care to our patients. There were times when I went home and cried and others when I felt happy to have been part of my patients lives.

  Unsuitable or offensive?

• Anonymous | 2-Feb-2012 2:53 pm

  @ Anonymous | 29-Jan-2012 3:17 pm
  
  lcp may not be the only method or best but at least you've heard of it! thought about it! compared it with other pathways!

  Unsuitable or offensive?

• Anonymous | 2-Feb-2012 4:21 pm

  Anonymous | 2-Feb-2012 2:53 pm
  
  meeting the needs of every individual is surely preferable to following any 'pathways'! they may have their merits but in some cases have been know, like guidelines and protocols to be followed blindly without even looking at the patient!
  
  It does not seem a good 'way' to become too obsessed with any 'pathways' and loose sight of the individual being cared for. As the term suggests they are only there as a guide, and only as effective and useful as those who follow them and we all know that some 'pathways' lead into blind alleys!
  

  Unsuitable or offensive?