What is palliative care, really?

Like introverts, palliative care is sorely misunderstood (Introvert speaking here). You may have heard all sorts about it – from the worrying to the downright confusing. So, before we get into what palliative care really is, let’s clear its name.

Unlike the myths and misconceptions out there, palliative care doesn’t mean giving up or losing hope. It doesn’t mean that you’re no longer being cared for, or that you’re being abandoned by the healthcare system. It definitely doesn’t mean you need to accept or live with pain and discomfort.

In its truest form, palliative care can help put your needs first. It is proven to relieve symptoms, improve well-being and comfort, and support your family.

If you don’t feel comfortable with the term “Palliative Care” just yet, here are some alternatives you can use instead:

Comfort Care, Supportive Care, Comprehensive Care, Needs-driven Care, Me-as-a-whole Care.

Let’s now take a closer look at what this type of care really is, and how it can help you.

Palliative care is a form of medical care that helps people who have a serious or life-limiting illness to live as comfortably as possible. The services it provides can be anything from medical care related to your condition, assistance with bathing and dressing, to simply a helping hand around the house.

In general, palliative care focuses on relieving symptoms, and assisting with practical issues to support your independent living at home, both medically and otherwise.

Palliative care empowers you to make decisions about your life that reflect your personal values and preferences. So if you want to live at home, and spend quality time with your loved ones, you have the support to do so.

Sounds great – what else?

I’m glad you asked! It has five main goals:

1. Help you be as comfortable as possible.
2. Relieve pain and discomfort, by managing your symptoms.
3. Support informal caregivers, like your family members or close friends.
4. Help you prepare and plan ahead.
5. Educate you about your condition and put you in the driver’s seat.

In short, the best thing about palliative care is that it’s based on your individual needs, not on your diagnosis or prognosis. It goes beyond medical care, and covers things like:

• Treatment or prescribing medications to ease your symptoms.
• Emotional support, such as advice about talking to family about your illness.
• Support and advice for your family.
• Medical evaluations and treatments.
• Guidance on understanding the healthcare system and your individual needs.
• Practical support, such as help with financials, legalities, insurance, housing or job-related problems.
• Support with advance care planning and end-of-life care.
• Physical therapy and other rehabilitation.
• Social interactions, such as family visits or organised activities.

So, where can I receive palliative care?

Wherever you feel most comfortable, within reason. That being said, it’s pretty common for people to receive palliative care in their home, hospital, nursing home, hospice or palliative care clinic, depending on the available resources in their area and the issues they’re facing.

Got it. But I’m still not sure when it’s time to receive palliative care?

Anytime. Palliative care can be offered at any age and any stage of illness, from the moment of diagnosis. It’s an option for anyone whose illness is impacting their quality of life. It can even be offered alongside life-prolonging treatments. If you haven’t been introduced to a palliative care team yet, it’s never too late (or early) to ask for an introduction.

The palliative care team? Isn’t that just doctors and nurses?

Nope! Common misconception, that. The palliative care team is a pretty wide ranging bunch, who work together to make living with a serious or life limiting illness easier.

The care team might include:

• You
• Family, friends and partners
• Doctors
• Nurses
• Home care providers
• Social workers and financial advisors
• Dieticians
• End-of-life doulas
• Counsellors, therapists and spiritual advisors
• Physical, occupational, and speech therapists
• …and more! In many cases, it’s totally up to you and your needs

Remember, the most important member of the palliative care team is you – so don’t hold back from being open and honest about your goals with your team.

So, whenever you’re ready, ask your GP about palliative care … or comfort care, or comprehensive care, or – enter your favourite term – care.

A note from Pal: We hope that having read this, palliative care feels clear and accessible to you – and most of all, that you feel confident asking for it!