End of life care at home

When we knew Jo’s diagnosis was incurable, we discussed the topic of where Jo would prefer to die. It’s a tough topic but one we knew we would have to discuss and also be pragmatic about. There were elements we could control, but we also knew there might be issues that we couldn’t foresee and we would need to see how things panned out.

Jo’s wish was clear from the outset that she would like to die at home and not in a hospital or a hospice. Jo had seen her Dad die in a hospice and though they cared very well for him, it wasn’t something she wanted, she wanted to die ideally in her own bed, with her family and her own things around her.

This wish is something that a lot of people have but there are a lot of practicalities that need to be taken into account. Firstly circumstance might mean it is impossible, death though forecast for the near future could happen unexpectedly during or following a routine procedure or due to a sudden deterioration in the patients health.

Secondly, you need the support of your family and this support is not inconsiderable, in the last days or weeks, you may need round the clock care and help with even the most basic activities such as getting dressed, going to the toilet, walking etc, so staying at home is only possible with someone who is fit and capable to help you with these tasks 24 hours a day. Also if you have other dependents such as small children, this may not be possible as the carer can’t be in two places at one time.

You also need to have a property that is suitable to provide single level living, so you need somewhere to sleep, wash and be able to go to the toilet all on the same floor. The ability to climb stairs will likely be one of the first things to go.

Support of friends is also something that is really important. Our friends have provided food in the form of meals, deserts, snacks etc, so that we haven’t had to worry too much about cooking for us or for the many visitors we have had. Our friends have also done shopping for us and if our children had been younger, they would have been invaluable in picking up and dropping the kids up from school etc.

Also you need to discuss fully with your partner, there is a great responsibility for them as they look after you and make decisions, they need to be fully prepared and completely ok with the burden of responsibility that this involves.

There is a lot of support available to allow you to stay at home and this is what we have found in the our area of the UK.

Our local hospice which we were referred to by our chemo nurses have been a fantastic help. We have a local personal Community care nurse, who we have spoken to multiple times each week and her team or the Hospice ward nurses are available 24 hours a day 7 days a week. She has contacted us to check how we are doing, to discuss medication, to arrange prescriptions, equipment etc and generally to see if she can get anyone else involved in Jo’s care and provide support to me.

The local district nurses have also been out and are also available 24 hours a day if needed. They are currently visiting weekly but would come more often if there were issues with Jo’s skin metastasis that needed dressing or if there was any other needs.

We have also had visits from our local GP and one of the other GP’s within the practice to see how Jo is and if we needed anything urgently. The GP’s have also been quickly processing any prescriptions etc and have arranged portable oxygen tanks so we have been able to get out of the house if only briefly.

Equipment wise we have been spoilt for choice and so far have received the following equipment. Firstly we got the electronic adjustable hospital bed, which we had delivered within 24 hours of it being requested and we have installed in the dining room, along with a pop up bed borrowed from our friends for me.

We have had an oxygen concentrator installed in the front room, so that Jo can receive oxygen as and when she needs it, which has been vital since her respiratory issues have left her very breathless and unable to keep her oxygen saturation levels at acceptable levels. Also we have a backup oxygen tank in case of power cuts.

On top of that we also separately requested some portable tanks which can be carried in a specialist rucksack which has allowed us to get out for lunch and also is useful for example when Jo is going to the shower or other parts of the house.

We were lent some crutches by our friends which have helped since Jo’s legs have swollen and her movement has become restricted and now we have had an occupational therapist visit who brought with her a zimmer frame, which is a bit more sturdy and helps as Jo’s balance is compromised. They are also arranging for some other support aids such as adjusting the height of the sofa and toilet seats to allow for easier access and a seat for the shower.

All these things and support from so many people, have made this all possible. However it is still hard to watch and see your partner decline in health and in Jo’s case it has been quite quick. Obviously we don’t know how long it will be, but it is heartbreaking to watch and it is stressful to try and support her, when unfortunately there is only a limited amount you can do. I am lucky that work, medical services and our support network means I am able to give Jo her wish to be at home and spend all my time with her, but it won’t be right for everyone.

If you do decide to go down this route, speak to your medical specialists, understand if there is likely to be any issues that will stop you following this path and be realistic about your abilities and those of your partner or family. Speak to your hospice as they are the experts on this area of care and also once you start make sure you keep in touch with your nurses, GP’s etc and tell them what is happening and ask for help as soon as needed.

Obviously I am not finished with this process and I will feedback again, if any of my thoughts change during the final stages.