CAN INTENSIVE CARE AT HOME HELP MY HUSBAND WITH MND TO HAVE THE OPTION TO LIVE, RATHER THAN DIE?

https://intensivecareathome.com/can-your-services-at-intensive-care-at-home-help-my-husband-with-end-stage-motor-neuron-disease-to-have-the-option-to-live-rather-than-helping-him-die-comfortably/

CAN YOUR SERVICES AT INTENSIVE CARE AT HOME HELP MY HUSBAND WITH END-STAGE MOTOR NEURON DISEASE TO HAVE THE OPTION TO LIVE, RATHER THAN HELPING HIM DIE COMFORTABLY?

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In today’s blog post, I want to answer a question from one of our clients and the question today is

Can your Services at Intensive Care at Home Help My Husband with End-Stage Motor Neuron Disease to Have the Option to Live, Rather than Helping Him Die Comfortably?

Hi Patrik,

I am very interested in your blog and service. My husband has end-stage motor neuron disease and is on non-invasive (NIV) BiPAP ventilation. I have tried to explore the option of tracheostomy with a medical professional as an option, or when we feel the non-invasive (NIV) BiPAP is no longer supporting him well enough, but have been met with limited evidence-based advice and/or resistance.

We want to prepare for this option as a possibility, but for motor neuron disease patients, it is not commonly offered, which we have found very distressing. When it is brought up with the medical professional, it is very clear that it is not a pathway at present in Australia. And it’s also clear that people are not comfortable discussing it, however they are comfortable discussing palliative care.

For end-stage MND, which again stands for motor neuron disease patients, the options seem only to be, “How can we help you to die comfortably?” rather than, “What options do you have to live?” if that is your choice. My husband has a good quality of life despite being completely dependent. This should be a choice that we can make and we want to make an educated decision about it.

We are NDIS funded and we are in Melbourne Australia. I would very much appreciate knowing more about your service and what is involved and how we go about exploring this option. We really hope you might be able to assist us.

From Sharon

Hi Sharon,

What a great question and I’m very sorry to hear about your husband’s situation. Well, few explorations here, Sharon. We are looking currently after patients with motor neuron disease (MND) at home. They have tracheostomies and they’re looked after with critical care nurses, 24 hours a day funded by the NDIS.

Now, I wholeheartedly agree with you that they shouldn’t be discussing palliative care with you. They should be discussing maximizing quality of life, or in some instances, quality of end-of-life at home for people who want to live with a tracheostomy.

Now, as you’re probably well aware, they are comfortable discussing palliative care, but they’re not comfortable discussing quality of life. It’s a joke, quite frankly. Now, if you look at this situation in Europe for example, Germany in particular, patients with MND (motor neuron disease) have been getting tracheostomies for decades and they’re living at home, or people who want to live at home with Intensive Care at Home services. It’s a no brainer and it’s a choice...

Continue reading at: https://intensivecareathome.com/can-your-services-at-intensive-care-at-home-help-my-husband-with-end-stage-motor-neuron-disease-to-have-the-option-to-live-rather-than-helping-him-die-comfortably/