What You Should Know About End-Of-Life Medical Care

Let me start by asking you a question: How confident are you in navigating our current medical system?

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Sometimes it feels like the system is designed to be confusing and knowing what services are available, and accessing and coordinating the care that you need can feel like a full-time job, amiright? And it doesn’t seem to matter which country or region you’re in – red tape and fine print are common denominators. And you’re supposed to figure all of this out while you’re wading through your grief – ugh.

This is just one way a death doula can help.

And if 90% of deaths are the result of disease/decay of the body (CDC 2016) then understanding your options can help you plan for a better death.

Death doulas understand how to work within the current medical system. A medical system whose main goal is to cure and takes a trial and error approach to treatment.

We’ve all experienced this before. A doctor prescribes a medication or therapy, you give it a go, wait a while to see if it’s working and if it doesn’t work then you try something else. Sometimes they’re aiming for the “cure” like in the case of antibiotics or sometimes they’re aiming to alleviate symptoms like in the case of antidepressants. In both cases, you may need to try more than one before you get the desired results.

But what happens when a cure isn’t possible and when the diagnosis you’re facing is life-limiting?

Then we start asking questions about managing symptoms, quality of life, and how to best provide comfort. The focus shifts to palliative care and hospice care.

So what’s the difference between palliative care and hospice care? Here are some basics:

**This list is generalized due to size constraints, other supports are offered in both categories.

Each place (long-term care residence, hospice, or hospital) will have its own admission criteria based on the level of care needed, life expectancy, and complexity of medical treatment.

Also, just to make things extra confusing, each country or region will have its own differences as well. For example, in Canada we have the Canadian Hospice Palliative Care Association that kind of lumps it all together. Then there are differences from one province to the next and from one facility to the next.

But no matter where you go palliative care and hospice care is seen as a multidisciplinary approach. It can include doctors, nurses, social workers, personal support workers, a chaplain, trained volunteers, and other therapists all working together to give someone the best life with the time they have left.

How does a death doula fit into all of this?

Basically, they help with all the non-medical things at end of life (EOL). They can help clients develop a care plan, determine their EOL goals, what tools they’ll use to measure progress and walk alongside them no matter where the road takes them. They’ll listen carefully to YOUR needs and collaborate with the medical team to support your goals. Death doulas help you navigate the system, consider your options, and figure out which services to access, when, and how. And they provide emotional and spiritual support through it all.

Death doulas can also help you set up advance directive tools (the inner geeky planner in me is so excited about this!). An advance directive tool lays out the type of care you’d like to receive in the event of a serious illness (three cheers for planning ahead!). It can also determine who can make decisions for you in the event that you‘re no longer able to. It works in conjunction with other legal documents like your will and power of attorney. (Of course, check your local laws because they’re all different!)

I think the approach a death doula takes is a great reminder for all of us that it’s always about the person who is dying. It’s NOT about us.

Even if we think we know better or have some strong opinions about what to do/how things should go – this is their journey.

And the good news is we’re free to do it differently when it’s our time to go and we can start planning now.

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