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Pacemaker removal before cremation

Posted By craterrh47

"Pacemaker removal before cremation"

About: Royal Infirmary of Edinburgh at Little France

(as a service user),

My father passed away after having heart Valve replacement surgery in September 2020 in Edinburgh Royal Infirmary. After nearly 4 weeks of the best efforts of medical staff he was never to recover and and in October we had to turn off all his machines and allow him to pass away.

My dad was a pacemaker user since he was 33. He had 7 pacemakers in total over the last 43 years. He also had 2 open heart surgeries for replacement valves. Our family owe so many years of having my dad around us to the NHS. So many Memories we otherwise would not have had.

On his passing we knew that his most recent pacemaker would need to be removed before his cremation and on speaking to the medical staff minutes after his passing we advised them that this would need to be done. My mother appeared to know that there would be a cost to her for having this removed. They acknowledged this and advised it would be done.

I contacted the Funeral director who advised that Forth Valley Crematoriums require written formal  Confirmation that the pacemaker had been removed by a trained body. 

I contacted ward 111 at ERI looking for this document. They were not aware of this. They made enquiries with their mortuary to find that the pacemaker had not been removed and was the responsibility of the undertaker.

Our undertaker from the Forth Valley area contacted the mortuary Directly and discussed this. They refused to remove the pacemaker so my undertaker had to make arrangements with the Forth Valley undertaker to bring my Dad to FVRH mortuary to have the procedure carried out there for a payment.

All pacemakers and heart surgery on my Dad had been carried out at ERI. The thought of someone having no access to my Dads medical records and on looking at his very scarred body due to his numerous historical procedures I can’t imagine how someone untrained would know where to start / find the Most recent pacemaker !!! This is an alarming concern.

Obviously this is a very distressing time for families and I would not have expected to have had to even discuss this ‘bun fight’. Traumatic to think that my Dads body was needlessly transported to another mortuary for a procedure that in my mind would have been automatically carried out by NHS as it was an NHS procedure to put it in. For anyone after the death of a loved one to have to discuss a further ‘mutilation’ of their loved one is further needless distress

I am aware that this is a very simple procedure and have been advised that several years ago a Doctor would attend wards and for a ‘Wee payment’ cut out the pacemaker. I have also been informed that GP’s can also carry out this procedure.

The purpose of my email is not to complain about my specific case but to propose a change in procedures that when someone is provided with a pacemaker then it should be in their end of life care plan or just in their medical notes that when they pass away wether in medical care or at home etc then the pacemakers are removed automatically at a convenient time by the NHS, where this letter of confirmation is a pro forma recognised throughout the country and lodged with the crematorium once the procedure is completed. I also propose that this removal of an NHS item should not be at the cost of the family but as part of the service we, the public pay for to have the NHS.

Could you please consider my proposals so that other families do not have to have the same experience as we did and that peoples loved ones are continued in being treated with respect after they have passed away. This should be part of the already appreciated service of the NHS.

Please let me know your thoughts and I hope my Dad’s passing will be able to bring comfort to other families by them not experiencing this additional distress.

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Responses

Response from Patient Experience Officer, Patient Experience Team, NHS Lothian 4 years ago
NHS Lothian

Submitted on 05/11/2020 at 16:27
Published on Care Opinion at 17:11

Dear craterrh47

Thank you so much for sharing your story with us via Care Opinion about your father and the care he received from the NHS over the years. I would like to send you and your family my deepest condolences at this very difficult time for you all.

I was very sorry to learn what a traumatic experience you and your family had in relation to the removal of your father’s pacemaker and I understand how distressing this has been for you all.

I really appreciate you taking the time to provide us with your proposals to help future families and we have shared your feedback with the Senior Clinical Management Team who are currently looking into this. We will contact you with more detail as soon as we are able to do so. In the meantime, I would like to thank you again for taking the time to share your experience with us.

Best wishes and I would again like to send you my deepest condolences.

Louise

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Response from Patient Experience Officer, Patient Experience Team, NHS Lothian 4 years ago
NHS Lothian

Submitted on 27/11/2020 at 11:41
Published on Care Opinion at 13:45

Dear craterrh47

Following my response on Care Opinion where I advised that a further story would follow, the senior management teams have asked me to share the following information with you. I do hope that it is of some help. Everyone was very sorry to learn of the additional distress that you and your family experienced at such a difficult time and on behalf of NHS Lothian, I would like to extend my apologies to you for this distress.

My understanding from your feedback was that medical staff advised they would take care of the removal of your father’s pacemaker. The team from ward 111 explains that removal of pacemakers is not something that is undertaken by staff within the Cardiothoracic Directorate and everyone is very sorry that this misunderstanding occurred. The service would like to reassure you that your story will be shared with the Senior Charge Nurses and Clinical Nurse Manager so that we can endeavour to avoid this happening again in the future.

I can explain that our normal process is that a death certificate is signed by a doctor. This document includes a section (Part D) which notifies the funeral director if a pacemaker is present. NHS Lothian also has an additional form (Deceased in – patient notification form) and the Cardiothoracic Service has a local document which both address whether or not a pacemaker is present. This is current practice in ward 111 and is the responsibility of medical staff with compliance being checked by nursing staff.

There is also a policy within NHS Lothian for deaths in hospital and in relation to devices such as pacemakers, I can explain that mortuary staff will not usually remove devices. This is because it is an invasive procedure for which express consent is required from the nearest relative or executor. While NHS Lothian’s mortuary team can perform the task of pacemaker removal, because of the consent that is required, this procedure is normally performed by funeral directors. If a family decides not to use a funeral director and devices need to be removed prior to cremation, the mortuary team may be able to assist.

I hope that this information is helpful for you and I am so sorry that the events following your father’s death were so traumatic. If you would like us to look any further into this, please contact us at feedback@nhslothian.scot.nhs.uk with your contact details and making reference to your Care Opinion username.

Best wishes

Louise

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Update posted by craterrh47 (a service user)

Thank you for your response Louise however I am some what disappointed in it,.

Whilst I informed you of the details of ‘My Story’ I was pretty clear this was not a complaint and by your response you appear to have treated it as such.

I am grateful that you did explain why Edinburgh Mortuary declined to remove the pacemaker however they did have our consent so not really relevant.

As you have said this is an intrusive procedure so should it not be carried out by medical staff who can also confirm that it has been removed properly? - more relevant in the defibrillator. Why is this the responsibility of the funeral director? Having a funeral director remove it would and did cause an additional charge even although it was removed by a mortuary employee. On the occasions when Mortuary’s do remove pacemakers is there a charge to the family? Is this a fixed regulated charge? Does this payment appear in the NHS accounts?

My whole point to ‘My Story’ was to have the NHS recognise and acknowledge their responsibilities to pacemaker users on their passing and request a change in procedures where the removal is the responsibility of the NHS as their end of life care plan. After all does the NHS charge for the removal of other alien items which the NHS has implanted in the body? Is this not verging on discriminative?

I have discussed this issue with so many friends and colleagues that we all have the opinion that this should be an automatic procedure carried out by the NHS for no cost as we already pay for the service. Confused why this is not already in place.

‘My Story’ was to request a review in your procedures and would very much like this to be considered. The NHS has I have already stated been an absolute godsend to my dad and our family I just feel really let down and deflated at the final hurdle.

I have also written to the Scottish Government regarding my review of procedures.

I do hope the staff at Ward 111 get the opportunity to read ‘My Story’ and clearly see that I was making no complaint about any of the medics / nurses etc. Can you please ensure them of this and again pass on our gratitude for the attentive and persistent care they provided for my dad.

I look forward to your response

Response from Ann Thomson, Team Leader - Patient Experience, Patient Experience Team, NHS Lothian 4 years ago
Ann Thomson
Team Leader - Patient Experience, Patient Experience Team,
NHS Lothian

Submitted on 16/12/2020 at 17:42
Published on Care Opinion at 17:42

Dear craterrh47,

I am so sorry for any unintended upset that our recent update caused. Louise and I worked closely together to gather information that we hoped would be helpful and we are sorry it has caused disappointment. We were aware you did not want to make a complaint and are sorry that in providing information about the processes within the ward and the mortuary, it has come across as such, this was really not our intention.

Please be reassured that the staff from Ward 111 are aware that you were not making a complaint about the team and thank you for your further kind words and gratitude for the care provided to your father. I have passed these on and asked that they be highlighted to the team.

You explain that the reason for your story was to request a review in procedures and that you would like this to be considered. I have shared all your feedback again with the senior management team for their consideration of your request.

From the Pathology Mortuary discussions, as explained previously, the mortuary team can assist pacemaker removal requests, usually when families have chosen to make their own funeral arrangement without engaging a Funeral Director. The team will review mortuary procedures to ensure communication with Funeral Directors, who do not work regularly with our site, can be supported if enquiries for pacemaker removal are received.

Thank you for taking this time to share your feedback with us as we are always keen to understand and learn from the people using our services.

Best wishes,

Ann

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