The difference palliative care can make in the dying process

It is natural to be afraid of death, as it raises questions about mortality and what will happen after death, and it can also raise fears of what will happen when you start to die and who can support you through this process.

Last updated: May 23rd 2022

Health & Specialised care

Your palliative care team will play an important role when you near the end stage of your life, making sure you are comfortable. [Source: iStock]

Key points:

The dying process can differ from person to person
Talk to your family as early as possible about your life wishes and preferences
Palliative care can ensure a person’s end of life is comfortable and pain-free

Your body can go through a number of changes during the dying process and can be a difficult time for the person experiencing it, and their family and friends.

Understanding the dying process and how a palliative care team can support you, can take away some of the fear and help you, your family and friends prepare for this final stage of life.

Camilla Rowland, Chief Executive Officer of Palliative Care Australia (PCA), peak body for palliative care, says, “People can receive palliative care for a long time before they die and may receive it at the same time as they receive curative treatment.

“They may have an on-off rotation through palliative care through various stages of their illness as they have periods of wellness and illness.

“For some people, palliative care is provided only at the end of life to support people through the dying process.”

Receiving palliative care

Ms Rowland says that you should be talking to your family and having conversations early on when receiving palliative care about your life wishes and preferences, whether that is after death wishes or if you want specific medical treatment.

This ensures your wishes are followed during the dying process by your friends, family and palliative care team if you are unable to communicate, and also plans ahead for potential funeral planning.

“The more that is known about what a person would like to happen at the end of life eases the burden of family members who may feel unprepared when this time comes,” explains Ms Rowland.

Palliative care assistance

Palliative care can be used very sporadically by some people while others may access it ongoing after they get a terminal diagnosis.

Ms Rowland says it is not uncommon for palliative care to only begin once a person has reached the end of life stage, as it provides specialist care to the person dying and also supports their family.

Your palliative care team will play an important role when you near the end stage of your life, making sure you are as comfortable as possible, as well as ensuring your family and friends are emotionally supported through this period.

Palliative care nurses are also able to teach your family about how to care for you during this dying stage to make sure you are comfortable if your care team isn’t around.

This can include information on dealing with the various changes of the dying process, like how to make you more comfortable or creating a calming environment.

Additionally, palliative care will be monitoring your symptoms and pain management during this time, and ensuring you have medication for pain or other dying symptoms.

After you pass, you can be assured that your palliative care team will be able to provide and refer your family to necessary grief and bereavement support and services.

Nearing the final stages

You may find the dying process quite sad and scary, and you may worry about what dying “feels” like. Your family and friends will likely feel the same as they watch someone important to them die.

The aim of palliative care is to ensure you are as comfortable as possible, so a palliative care nurse or practitioner will be with you and your family every step of the way to ensure your final days and hours are pain-free.

“Caring for a person during the last few weeks and days of their life can be distressing, demanding and tiring. Many different feelings and emotions may surface at this time. Carers often worry that death will be painful, however, good palliative care aims to address any emerging pain,” explains Ms Rowland.

“Generally, the time before death, and moment of death, are generally peaceful.

“There is a gentle winding-down that may take several days. The body starts to ‘let go’ of life. If restlessness does occur, it can be treated.”

You should be in regular contact with your palliative care team to make sure you have all the information you need, and that you and your family are supported.

Noticeable changes

The dying process can differ from person to person and it can be helpful to understand what could happen to you during this time.

Ms Rowland says you and your family should be prepared for this end stage of your life, as it can vastly improve the palliative care you receive and ensures you receive the necessary pain management.

Your family will also be able to get information from your palliative care team about the dying process, so they can advocate on your behalf if you become unable to voice your concerns, wishes or needs.

“In the first instance, it is recommended that families and carers check in with the medical/health team or palliative care team, who can advise further about the needs/requirements of their loved one,” explains Ms Rowland.

“Palliative care professionals can prepare families by outlining what to expect when a person is dying and to prepare them for some of the signs and symptoms. Often palliative care volunteers are available to provide a support role during this time.”

Some of the changes you and your family may notice in the weeks leading up to death:

Consumption: As you die, you may lose interest in food and drink or have little appetite or thirst to want to drink.
It is best for family and friends to offer food and drink if you want it, but they shouldn’t try to force you to eat or drink something.

Sleep and attention: Nearing the end of your life, you will likely become very tired. You may end up sleeping often, be very drowsy or not wake up easily.
You may also not feel like talking all that much as it can be tiring. However, some people find talking calming and want to reminisce about their life as they near death.

Physical changes: You may start to lose weight and since your body is not regenerating like it used to, your skin will become thinner.

Some of the changes that will occur in the days and hours leading up to death:

Lose consciousness: You may not be responsive during this time and may be unconscious leading up to your death.
Temperature and skin: During this period of time, your extremities, like your hands or feet, may have a cooler temperature compared to the rest of your body.
But at other times, your body temperature may fluctuate and your hands or feet may feel clammy and hot with skin starting to appear blotchy.
Bodily fluids: Since the body is slowing down, the reflexes that would normally get rid of saliva and mucus may begin collecting in your nose or throat. This can also cause sounds, like gurgling or bubbling.
Changing continence: As you near the end stages of life, you will need to use the bathroom less because you don’t drink or consume as much.
You may or may not lose control of your bladder and bowels. If you do, your team will need to use continence pads or other aids to help you feel comfortable and clean.

Breathing differences: Your breathing pattern may change. Your breathing could be fast, slow with long gaps, shallow breaths, or very noisy breaths.
This occurs when the circulation of blood starts to slow down and there is a build-up in bodily waste.

Restlessness: Also due to the slowed circulation in blood around the body and to the brain, you may become very agitated or restless.
This restlessness can be assisted by having your palliative care team or family create a calm environment, like relaxing music or soft conversation.

At the end, your family or palliative care team will notice your passing when you no longer are breathing, have no heartbeat/pulse, and you do not respond to being woken. You may also have your eyelids slightly open, fixed pupils, and a slightly open mouth.

PCA says your family doesn’t have to do anything right away when you die and they should lean on each other for support once you pass.

You can then contact a funeral director who will be able to take away your body and start assisting with any funeral planning and legal documents.

How are you preparing yourself for the end of life process while in palliative care? Tell us in the comments below.