Reggie and Rosemarie are a retired couple. Reggie is in his mid 80s and not in good health.
He has cancer which is not operable. It is slow growing and he has decided not to have chemotherapy but is aware that he has a limited lifespan but he doesn’t want to know how long he has left. He has pain killing medication to get through the difficult days but some days are really good and he can potter in his garden. There is a small operation he could have as a day case which would likely help his pain and he was thinking of having this before lockdown. He isn’t so sure now.
Rosemarie is very stoic about this. She wants to look after Reggie herself but knows that this might get harder as he deteriorates. For the time being Reggie can still drive and care for himself. They both know that this won’t last long.
Reggie’s only son emigrated last year. The couple have relatives about eight miles away but because of lockdown they can’t help.
Rosemarie quite likes the online ordering from the supermarkets, it saves the burden of shopping. At the moment she alternates between 2 major supermarkets as she can’t decide which she likes best.
She really likes the Thursday night clapping and she is very active in a Whatsapp group that one of the neighbours has set up. She doesn’t feel quite so alone now and feels that for the first time there is a bit of a community in the street and she knows that she will need this when Reggie goes. She can’t even begin to think of what would happen if she had coronavirus and had to go into hospital because on his bad days, Reggie just sits around all day – these are becoming more frequent.
What the pandemic has meant for them:
- Reggie is really worried about coronavirus and having to go into hospital and die on his own. He has spoken to Rosemarie about this and they know that this may mean signing a Do Not Attempt Resuscitation (DNAR) form. Reggie already has an advance directive which makes it clear he does not want lots of treatment at the end of his life. They just didn’t think that maybe something like coronavirus might make this happen much sooner.
- Rosemarie is feeling overwhelmed about the big likelihood of her becoming a widow sometime soon and what this will be like if she can’t be at Reggie’s bedside when he dies or have a proper funeral. She isn’t sure how Reggie’s son will react if he realises his dad might die alone.
- Reggie’s operation is on hold. It won’t really increase his life, but might give him a better quality of life. It may mean that he avoids medication for longer and can carry on driving. He doesn’t know when he will have this surgery. He doesn’t know if it is urgent or not and is relying on his GP to support him. He has been told that his surgery may happen in a private hospital that the NHS has taken over.
- Rosemarie is worried about Reggie being in pain. She can get medication for him and has been told a district nurse can call but this isn’t needed yet. She is not sure how to contact the district nurse but assumes this will involve a phone call to the surgery and a long wait to speak to a person.
What we did in this kind of situation
- HDCHC asked the Health Board what was in place for people who were at the end of their life and who needed to go into hospital.
- CHCs have also discussed with WG if there is potential for an all-Wales approach on areas such as cancer services so that different bodies can work together across Wales
- HDCHC has discussed with the Health Board the impact on people when loved ones have to die in hospital from conditions such as cancer and they maybe have to die alone. We asked about bereavement support and counselling services.
- CHCs across Wales have emphasised to WG and local Health Boards that people have become increasingly frustrated at the delay in reintroducing routine services. We also said that people with delayed surgery need to be communicated with clearly.
- CHCs across Wales have asked Health Boards about using private hospitals and how long these will be used to help manage the demands on the NHS.
- HDCHC has regularly asked the Health Board about surgery lists. We know that there is a growing list of people needing operations for different reasons. The Health Board has explained to us how much more complicated it is now to do even a relatively simple procedure. HDCHC has said that the Health Board needs to explain this to people so that they understand why things don’t seem to be improving.
- HDCHC asked the Health Board to make the public aware of the public cancer advice/helpline that they had mentioned in their Public Board meeting. We wanted people to be able to access the Cancer Nurse Specialist Team for advice and support.
- We told the Health Board that if there was any documentation that is made available to patients/their families around this sensitive subject of DNR, that HDCHC would like to see this so we could share it with our members to review the information available.
- HDCHC told the Health Board that there were lots of worries in the community about ‘Do Not Attempt Resuscitation’ decisions. In particular, families were worried that relatives in care homes were being asked to ‘sign’ these documents without maybe fully understanding what they meant.
- HDCHC also checked that there was chaplaincy provision so that people with religious beliefs could be supported in hospital.