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Things To Know About Palliative Care

“We Cannot Change the Outcome, But We Can Affect the Journey” – Ann Richardson

When it comes to palliative care most people freak out!

There is often a misunderstanding that when people are referred to palliative care, they are about to die. They often think “this is it, the end of the road and my time is up”. People fear that palliative care is a short one-way journey to the grave, much like being pushed off the edge of a cliff! This is simply not true, palliative care does not mean always mean terminal care!

This care is, in fact, a medical luxury and very few people have access to it. It makes the end of life more meaningful; it adds to both the quality and quantity of life. It provides care for carers and it affirms and comforts life rather than ends its. Contrary to popular belief, palliative care is good for you! But we won’t get this until we understand the catch.

Here is the catch, the big stink, the ultimate betrayal!

We are mortal, we are all going to die. There is no way out of this dilemma. Unless we understand, accept and realise that is neither our fault nor anyone else’s fault, we won’t be able to face death and appreciate the benefits of palliative care. The role of palliative care is to make the transition from living to dying and ultimately death as easy as possible. However, this is a big task because dying is not easy.

The motto of Palliative Care is:

‘To cure sometimes, to relieve often, and to comfort always.’

But Ultimately, For All of Us, It is:

‘To cure sometimes, to relieve often, and to comfort always

Overcoming Fear Of Death

The Benefits of Palliative Care

No one should want to deny themselves relief and comfort. When it comes to dying, we need both relief from the symptoms of illness and comfort in the transition from life to death. 

Family, Friends and Dying

Many people do not cope with death and dying very well. Many people who have been diagnosed with an incurable or terminal illness will often find that their friends and family close off and shy away. Many do not know what to say and in their awkwardness, it is easier for them to hide than face the reality of a life that is coming to an end.

A palliative care team do “dying” really well. If you are dying, these are the experts worth getting an opinion from! They are comfortable with all aspects of dying and can chat and joke about it. To them, it is an everyday business.

When Should Palliative Care Begin?

This is a point of contention. This care should not start when a person is dying, any more than antenatal care of a pregnant mum should start when she enters the birthing suite. Palliative care should be part of the journey, starting with the transition from life, through the dying process, onto death and finally bereavement. The last months of life are a rugged – off-road journey. It is always beneficial to have some additional resources planned rather than run out of steam. 

It Provides Hope

What hope can there be when life is ending? Well, this all depends on the perspective you hold. In reality, life starts ending from the day we are born, but we only appreciate this fact when the end comes into view. I tell my dying patients that they have two choices, to either “get on with living”, or “to get on with dying”.

This care offers the hope needed to get on with living. A care team can make this more achievable by the work they do.

It Manages Symptoms

When the body fails to function, we feel it and we need some help. Symptoms typically include fatigue, weakness, poor appetite and pain. However, depending on the cause and trajectory of the illness, the list may be much longer. Early symptoms may be mild and unnoticeable but make living difficult towards the last few weeks and months of life, making good medical care essential.

A care team specialise in the management and relief of physical symptoms of a failing body. They are the team to have when the storm is raging.

Palliative Care and Our Emotions

Dying is an emotional tsunami. It is our emotions that make dying so difficult. We can rationalise the end of physical suffering but there is no way to manage the disappointment and loss we feel at the thought of having to say goodbye.

The emotions around loss and disappointment are real and they require time to be digested. It can be overwhelming and testing and painful. It is in these emotions that a care team are invaluable. They understand how you feel and they know how to manage this tsunami of powerful unexpected feelings that people have around dying.

We are allowed to be emotional; it’s what makes us human. It is also why we need humans to help us with our emotions. This is not rocket science- it is about love and care when we need it most.

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palliative care family gathering

Care and Spirituality

Our spirits will continue on after our journey on Earth. Where we go is put together in our faith or belief system. It is no secret that we are spiritual beings. Our faith and beliefs are unique, but it should not be so unique and personal that it cannot be discussed. Conversations about God, faith, religion and all that comes in between are permissible. Everyone is entitled to their view and should be free to change if it is obscure or darkened. People often question their spirituality or seek answers about their spirituality at the end of life. A care team are aware of your spirituality. Although, thy may not share your views nor may you share theirs, they are happy to help you walk your spiritual journey to the end.

Vulnerability and Judgement

As death approaches people to become more vulnerable. This vulnerability is sometimes raw, and can be a burden to bear. Palliative care professionals will not exploit this vulnerability. They are not there to judge but to help you in the final stages of life.

Care After Death

Palliative care does not end at death. Following death, there is a period of bereavement and loss. The palliative care teams know this and are able to prepare families; before, during and after death. This after-care is important.

The Final Hours

The final hours of life can be stormy. This is where palliative care is indispensable. Care physicians are skilled at pouring oil on troubled water. They can manage suffering when life is ending. This is their work and what they do best.

Being Human

Sometimes, we easily forget that we are all human. We are fallible: From soft spots, bald spots to itchy sports and spotted spots. No one is perfect and we all behave differently in times of distress. Care teams know this, and can duck when they need to and know when to throw a punch. Dying can be messy. Palliative care professionals know how to cope with our humanity.

Palliative Care and Reality

We love euphemisms in life, particularly when it comes to death. We like to think that people pass away. The reality is that they die. Palliative care should provide a truthful discussion about the matters of life and death. Death is a reality and pretending it won’t happen does not help. This reality is painful. However, denial proves more painful and does not prevent death.

More Information and Resources

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How to Access Palliative Care

If you or someone you know has an incurable illness, it is recommended to have discussions about care early.
Talking about dying has never killed anyone! It is much easier to leave a care consultation with “We will be in touch and as regularly as you need us”,as opposed to “ Johnny is dying and we need to get him to hospice now- he has hours left to live.

Don’t let dying be a plane crash disaster- palliative care can land this plane, through any storm. It is what they do best.

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Read More About Palliative Care

We strongly believe everyone should have some form of palliative care, as its focus is about providing holistic and compassionate medical care at the end stages of life. There are many misconceptions about palliative care, the most common being that it’s terminal care when it is in fact so much more.

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Palliative Care Resources In Australia

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Palliative Care Resources

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