“Palliative care is helping people live well till the end”

End of life care is personal. It is about you and me, and about the people we love. It is about a journey we will have to negotiate for ourselves, what we can anticipate on that journey and what we might find helpful.

Thinking about our own death and dying is something that makes most of us uneasy.  Death denial is very common in a world which places such focus on youth, beauty, success and energy, and hides away from the reality that life is as much about being old as it is about being young.

It is especially difficult in the medical world where death is often seen as failure, as the result of a mistake, or as something we should fight. In part this is because of the huge strides that have been made in healthcare in recent generations, and it is now possible to reach your forties without having experienced a significant death.

This creates high expectations, so it has been disturbing to see how powerless all our science and medicine has been in the face of the tiny ball of fat and protein known as Coronavirus, and a reminder to us of the experience of previous generations or societies where death was much more common. But while death denial is understandable it is also something that can cause real pain and distress.

The transitions of life

I remember a son and daughter sitting beside the bed of their much loved mother in a hospice, and she began to talk to them about what she wanted them to do after she died. They refused to listen: “Stop being so morbid mummy. You have to be positive. We will soon have you home.”

It was obvious their mother was dying but it was just too painful for them to engage with that conversation, so they denied it. But in denying their mother that opportunity their fears prevented her from saying what she wanted to, and isolated her from her children at the very point when she needed their support and honesty most.

Just over two weeks ago my first grandchild, Kai Patrick, was born.  He has already started on a journey through the many transitions that comprise life. He has moved from a dark, wet indoor swimming-pool where he had constant intravenous feeding to a bright world which is colder and where food has to be worked for through sucking.

Kai will grow, will gain control of his limbs and his functionality, and knowledge and engagement with others will increase. He will transition to new food, to new awareness, to school, and will travel through the adjustments of adolescence as he moves from being a dependent child to an independent adult. Work and relationships, perhaps becoming a parent and rearing his own children will be another phase before retirement, gradually slowing down and transitioning towards the end of his life. 

These patterns are common for most people, though these can be interrupted along the way by illness or accident. Negotiating the transitions in life are crucial to completing it well.

The meaning of "palliative care"

Palliative care is about recognising the stages of life and helping people to negotiate the transitions that we all need to make in order to live well.  

The word ‘palliative’ comes from the Latin for ‘cloak’. To cover over symptoms when the underlying cause of those symptoms cannot be cured or changed. This may be because of a disease that has reached a point when treatment is no longer an option, or it may be because of old age when the body has reached its end.

People who work in palliative care are committed to helping people as they adjust physically, emotionally and spiritually to the different transitions at the end of life and use medicines, listening, support and experience to help people navigate their own journey towards their own life’s end.

Helping people adjust

In the same way that Kai Patrick has the code in his DNA to make him seek the breast to suckle, there is within our DNA the code to help us as life gradually shuts down, and it is a very common and repeated gentle pattern. Whether through cancer or organ failure, old age or chronic illness, the pattern at the end of life shares a similar end pathway.  

It often begins with an emotional transition to the fact that unlike previously things are not getting better. This can be a very difficult transition and one which some people never make because they are so focused on treatments and cures, and our cure-focused health system can add to the difficulty, making people feel guilty that they have somehow given up rather than accepting the reality of where they are at.

Many people have worries about dying because they have seen it in films as painful or distressing, and these worries may need to be gently explored. Issues from the past that they want to resolve may need to be addressed along with issues of spirituality or meaning.

Palliative care involves helping people adjust, and maximising their life opportunities by helping with any symptoms that arise as a result of the body or mind changing.  Constipation, nausea, pain, anxiety, and stiffness may affect some people and can be helped by appropriate use of medication, as well as emotional and spiritual connection.

Physical changes

The next transition which can be particularly hard for families involves food. As people approach the end of life their needs for food and fluid change.  The body’s metabolism adjusts. The purpose of food changes from being a fuel to being a source of comfort. As we do not give Kai Patrick beef burgers and chips in his phase of life it is important to not overburden those in the dying phase with too much food as we know that because of chemical changes their body cannot use it. Palliative care can help to reassure families that mummy is not starving, this is the normal process of life.

After this comes tiredness, with increasing amounts of napping during the day and the windows of alertness decreasing. This is a point when families may have one-to-one time with their loved one before the next transition to sleep.

This phase begins with an easily awakened sleep and continues until people are unrousable. Helping families to be with their loved one and travel with them by sharing stories or music around the bed can be helpful to those who have not travelled with the dying before. COVID has made this very important part of life difficult, and its loss has been very hard for patients and families alike.

As sleep becomes deeper the person’s awareness decreases and they may start to breathe in a noisy way. The person is too asleep to clear their throat of the fluid that’s making the noise. Like somebody who is snoring the noise is probably more distressing to the person listening than to the individual themselves.

The final transition involves a change in breathing pattern, with gaps happening as breaths gradually slow, and finally stop.

These transitions were well known to previous generations.  The creation of the palliative care speciality can make us think that dying is a medical event. It is not – it’s a life event, and its significance extends beyond the medical.  Before I started in palliative care I worked in obstetrics helping to deliver babies like