Palliative Care Pairuri
Thinking about the end-of-life, and talking with your family/whānau about your wishes, can be difficult and distressing. This information is here to support you when you feel ready to consider this and would like to know more.
Preparing for Death
your whānau and care team ahead of time. This may include setting up an Enduring Power of Attorney and writing a will. To learn more about how to do this, see Advanced Care Planning here.
The last few weeks of life
Where you choose to die is your decision. You may choose to die at home or you may choose not to. Your preferences may depend on what care you are receiving or your own personal circumstances. You can also change your mind about where you want to die. It will help your family/whānau and care team if you let them know your wishes.
The last few weeks of life can be full of physical and emotional changes. If you are a carer, keep in touch with the palliative care team who will be able to support you through this time. Make sure that you have their after-hours number so that you can reach out to them if you are unsure about something so that you don’t have to a ring an ambulance.
Nearing death
The final stages of dying may come quickly or may happen over a few days.
You may sleep and nap a lot more, have less energy and feel drowsy. You may become detached from reality and less aware of your surroundings.
Family and whānau may feel conflicting feelings during this time of not wanting their loved one to die, but also that they are waiting with anticipation and have “had enough”. All of these feelings are normal and can be exhausting. If your loved one is in a hospice or care facility, ask the staff there if there is anything that you need that could make this time more comfortable for you.
Dying and the Dying Process
For many people, dying is peaceful. Each person’s death is individual, just as their life is.
For carers, family and whānau, the palliative care team will expect to spend more time with you in these later stages, so ask for help if you are concerned.
You can bring great benefit to a person dying, just by being there, sitting with them, holding their hand, or speaking in a calm and reassuring way.
Supporting a loved one through the late stages of their cancer journey can be difficult. There are some aspects of care that you can and will want to provide – these are comforting measures for your loved one. Wherever possible, the palliative care team – including the doctors, nurses and support staff – should be providing regular care and support.
It is hard to say what exactly will happen in the final stage of life and especially near death. The following symptoms are examples of what may happen in some people with cancer who are dying. While not all may happen, it may help you to know about them.
Changes in body function
weakness – usually the patient cannot get out of bed and has trouble moving around in bed
needs help with nearly everything
less and less interest in food, often with very little food and fluid intake for days
trouble swallowing pills and medicines
drowsiness – the person may nap or sleep much of the time and may be hard to rouse or wake
short attention span, may not be able to focus on what is happening
confusion about time, place, or people
limited ability to cooperate with carers.
What carers can do:
help the patient turn and change positions every 1 to 2 hours, the best time to reposition is about 30 minutes after pain medicine is given
speak in a calm, quiet voice
if the patient has trouble swallowing pills, contact your doctor with urgency to notify them and discuss alternative medications
try ice chips or sips of liquid with a straw
apply cool, moist face washers to head, face, or hands.
Changes in consciousness
more sleeping during the day
hard to wake or rouse from sleep
confusion about time, place, or people
restless, might pull at bed linen
may talk about things unrelated to the events or people present
may have more anxiety, restlessness, fear, and loneliness at night
may have a short time when they are mentally clear before going back into semi-consciousness.
What carers can do:
plan your times with the patient when they are most alert or during the day or night
remind them who you are and what day and time it is
continue pain medication under the advice of their doctor, as this may be the cause of the change in consciousness
if they are restless, try to find out if they are having pain
always check with your doctor or treating team about administering medication as prescribed
use calm, confident, gentle tones
gentle touching, caressing, holding, and rocking are sometimes helpful and comforting
you can connect through their senses – playing their favourite music, talking to them, reading texts or emails from loved ones, having pets around, safely burning scented candles, stroking their hair, holding their hand, or washing and bathing can all be very soothing for you and your loved one.
Changes in metabolism
the patient may have less interest in food
they may have a dry mouth
may no longer need some of their usual medicines, such as vitamins, blood pressure medicines, and diuretics – check with the doctor or nurse.
What carers can do:
put lip balm or lubricant (like Vaseline®, pawpaw ointment) on the lips to prevent drying
ice chips or sips of water or juice from a straw.
Changes in secretions
mucus may collect in the back of the throat
this may cause a “rattling” sound with breathing that’s very distressing to hear, but it isn’t usually uncomfortable for the patient
secretions may thicken and build up.
What carers can do:
if the mouth secretions increase, adding humidity to the room can help
if the patient can swallow safely, give ice chips or sips of liquid through a straw
change the patient’s position – turning them to the side may help secretions drain from the mouth
continue to clean the teeth and mouth with water and a soft toothbrush or foam mouth swabs
certain medicines may help – always check with your doctor or treating team before administering medications.
Changes in circulation and temperature
arms and legs may feel cool to the touch as circulation slows down
skin on arms, legs, hands, and feet may darken and look blue or mottled (blotchy)
other areas of the body may become either darker or paler
skin may feel cold or dry or damp
heart rate may become fast, faint, or irregular
blood pressure may get lower and become hard to hear.
What carers can do:
keep the patient warm with blankets or light bed coverings (do not use electric blankets)
Keep talking to them, soothe them.
Changes in senses
Following the death, when the family, carer or support person is ready, you will need to notify your palliative care service (if one was involved in the person’s care), your doctor, or you can directly contact a funeral director of your choice. A palliative care nurse may visit the home to support the family and carer following the person’s death.
The palliative care team providing care can give you more guidance on what to do. Vision may become blurry or dim
pupils may stay the same size
may have trouble closing eyelids
most patients can hear you even after they can no longer speak.
What carers can do:
use low wattage/lumen lights, such as a lamp, which may be better than room lights
always assume the patient can hear you
continue to speak with and touch the patient to reassure them of your presence.
Changes in breathing
breathing may speed up and slow down
patient may grunt while breathing
neck muscles may look tight to help breathe
mucus in the back of the throat may cause ‘rattling’ or ‘gurgling’ noise with each breath
the patient may not breathe for periods of up 10 to 30 seconds. They may turn blue which can be very alarming, but is a natural part of the dying process.
What carers can do:
reposition the patient on their back, off to one side, then the other
raising the patient’s head may give some relief – use pillows to prop the patient’s head and chest at an angle or raise the head of a hospital bed
any position that seems to make breathing easier is OK, including sitting up with good support – a small person may be more comfortable in your arms
contact the wider whānau (family) along with a kaumātua, cultural and/or spiritual leader to conduct any necessary cultural customs.
Changes in elimination
urine may become darker and decrease in amount
yhe patient may be incontinent of urine and stools
What carers can do:
use incontinence pads, put a ‘bluey’ or a waterproof pad under them
if the patient has a catheter to collect urine, the nurse will teach you to care for it
bathe the patient as they can tolerate it – this could be a sponge bath or simply washing certain parts of the body.
The Dying Process
In the last few hours of the natural dying process, a person’s breathing becomes shallower and faster than normal. The breathing muscles become weak like all the other body muscles. When the breathing muscles are weak, extra muscles help. The person’s breathing pattern often becomes irregular with pauses. These pauses are often followed by a few fast and deep breaths. The person dies when he or she does not draw a breath again after a pause.
Whānau can contact the wider whānau (family) along with a kaumātua, cultural and/or spiritual leader to conduct any necessary cultural customs prior to the imminent passing. This may also be an opportunity to alert the carers of the Marae of the situation so that they can be prepared if the person will be taken there to rest.
Immediately after death
Immediately after a death is often a peaceful time. You, family, and friends may just want to sit with the person. You may or may not want to be alone. For whānau Māori (and many other cultures) this time is particularly tapu or sacred which often dictates the need for certain tikanga (rituals and processes) to be conducted to ensure the spiritual health of the person is maintained.
An expected death is not an emergency. You do not need to call for the police or an ambulance. A doctor will need to come and certify the death. The palliative care team can give you more guidance on what to do.
At home, there are things that you will need to organise. Writing a list of things to do in advance, with names and phone numbers to ring can help.
If you would like your loved one clean shaven, it is important this is done close to or soon after the person has passed. It is often not possible in funeral homes as the skin will be too fragile.
Death at home
Following the death, when the family, carer or support person is ready, you will need to notify your palliative care service (if one was involved in the person’s care), your doctor, or you can directly contact a funeral director of your choice. A palliative care nurse may visit the home to support the family and carer following the person’s death.
The palliative care team providing care can give you more guidance on what to do.
Death in a hospital or care facility
If the death happens in a hospital or care facility, the staff will help you through the process and help you understand what you need to do. Staff are there to support you and are always available to answer your questions if you are unsure.
Whānau Māori may choose a whānau liaison (kaitakawaenga) to communicate any cultural needs and requirements with hospital staff at this time.
Leftover medications
It is not a good idea to flush leftover medications down the toilet, as this pollutes the environment. Keeping un-needed medications at home can also present a safety issue.
It is a good idea to take leftover medications to a pharmacy, so they can dispose of the medications properly. Most pharmacies take leftover medications that you want to get rid of.
Funeral/Tangihanga preparations
You may want to think about the kind of funeral you would like. Others prefer to leave it up to their family to plan.
Planning tangihanga before a loved one has passed maybe considered tapu in accordance with your iwi, hapū or whānau beliefs. If you are unsure about how to go about it seek advice or guidance from a kaumātua, cultural and/ or spiritual leader to have a hui about the best way to approach making preparations.
Even if you don’t want to plan your funeral in detail, it is often meaningful to be involved in the planning with your family and write down some basic information such as:
do you want a funeral service of some other gathering?
do you want to be buried or cremated?
where would you like your remains or ashes placed?
who would you like to be invited, and who would you like to speak?
is there special music you would like played?
would you like flowers or would you prefer people give to a particular charity instead?
is there a special memory or legacy you want to share?
You may also like to contact the New Zealand Funeral Directors Association for further information on prearranging or prepaying for a funeral. You may want to think about the kind of funeral you would like. Others prefer to leave it up to their family to plan.
Even if you don’t want to plan your funeral in detail, it is often meaningful to be involved in the planning with your family and write down some basic information such as:
do you want a funeral service of some other gathering?
do you want to be buried or cremated?
where would you like your remains or ashes placed?
who would you like to be invited, and who would you like to speak?
is there special music you would like played?
would you like flowers or would you prefer people give to a particular charity instead?
is there a special memory or legacy you want to share?
You may also like to contact the New Zealand Funeral Directors Association for further information on prearranging or prepaying for a funeral.
Talking about death is never easy
Although most of us have thought about death, talking about death and dying is often a hard conversation to start with your loved ones. Neither the person who has cancer, or family/whānau, wants to worry or burden their loved ones or make them feel sad.
In Māori and other cultures, it can be believed that talking about death before it has happened can invite death, and so it is not unusual to avoid this conversation.
How can talking about death help
Like many things, talking about death and dying can reduce fear and anxiety.
You don’t have to speak about the dying itself – sometimes the most important things is what we say to those we care about – telling someone that you love them and are proud of them might be the most important thing to you.
Family/whānau planning
Talking about death provides an opportunity to let your loved ones know your wishes following death. These wishes may be in the immediate days after death such as where you would like to lie in rest before the burial or cremation e.g. in your home, at your marae or at the funeral home. Or you may have wishes about things in the longer term such as what you would like to happen to your money and possessions.
You should encourage your family/whānau to be part of these discussions. Talking to your loved ones about death can provide reassurance and peace of mind knowing that those who you care about will not have to worry about knowing what your wishes are.
There are a number of resources that are available to you to help with having these conversations:
a pastoral carer, counsellor or psychologist will support you and those close to you, with talking about and approaching end of life
Kaumātua, Cultural and/ or Spiritual leaders can help to advise and guide sensitive conversations that maybe considered tapu with you and your whānau to help with making decisions about what will happen after a loved one passes that will keep everyone safe spiritually
talking with a psychologist about end of life can be an empowering experience. You can explore your relationships, identify what has held meaning for you, and your values. This can assist you in knowing of the legacy you have created, and feel comforted about how you will be cared for at the end of life.
A useful reference for those who want to read further is Staring at the Sun: Overcoming the terror of death, by psychotherapist Irvin D Yalom about coming to terms with anxiety about death.
Living with a diagnosis of terminal cancer can be daunting and can lead to a sense of hopelessness and uncertainty. After coming to terms with the diagnosis, it is important for adults to communicate with children and young people about what is happening, what to expect and how to best take advantage of time left together.
Modelling grief
Adults may wish to protect children from the truth or from observing adults who are sad and crying. However, children often sense when something is happening and hiding the truth can increase their anxiety and distress.
Children can learn how to process their own grief by watching adults who are also feeling sad and grieving.
Being open and honest
Open and honest explanations about living with cancer, cancer treatment, dying and death help children cope better.
With many advanced cancers, the outcome (prognosis) is fairly clear and people are given some indication of how much time they may have left to live. However, it is not unusual for people with advanced cancers to survive beyond a few months, sometimes for many years.
If death is likely in a short time, it is important to be open and truthful about death. Avoid remarks such as ‘death will be peaceful’ as this may not be true.
Adults can find talking to children about themselves or their partner very challenging and can get help and guidance from social workers or health professionals within cancer centres or palliative care services.
Open conversations about death can provide families with an opportunity to show care for each other and resolve any issues or problems. Older children in particular may benefit from an opportunity to discuss old arguments and make amends.
Finding the right words
Explaining cancer to children can be one of the most difficult things a parent can experience. Use a normal tone of voice and give short and simple explanations and responses that the child will understand. If you do not have the answers to their questions, tell them you will find out and get back to them.
Explain that it is ok if they wish to be involved in their parent’s care. Discuss changes in family roles and how they can help but do not overload them with responsibilities and tasks.
Keep children up to date with information and repeat information to ensure they understand. Prepare them by explaining how the illness might affect the person in the days ahead and what treatment they may have. For example, their skin colour, lips and nails may be different to usual, and they may need a lot of medicine.
Encourage children to ask questions and share their feelings. Tell them it is okay to feel sad, upset, or angry and that you’ll always love them.
Use straightforward words and terms children can understand such as “death” and “dying” instead of “passed away”, “went to sleep” or “resting” that can be confusing.
Balancing hope with reality
Having a diagnosis of advanced cancer does not mean giving up hope. Some people with cancer live for years with ongoing treatment and symptom control.
Many families hope they will have good days and find ways to make the most of their time together. For example, if your loved one is feeling ok, plan a special family outing to the beach, a sporting event or theatre performance.
Accept offers of help from family and friends that will allow you to have more time and energy with your family.
Spend meaningful time together whether at home or hospital. For example, switch off mobile phones during mealtimes to avoid distractions during your time together.
As the illness progresses, you can still share hope with children while acknowledging the reality of the situation and help prepare them for loss.
Helping children grieve
When a loved one dies, children need a supportive and safe environment in which to experience their grief. Children who experience a major loss may grieve differently than adults.
Make sure children know that they do not need to hide their emotions and that they have your permission to mourn.
Accept and affirm their feelings. Do not try to correct how they feel or suggest how they ‘should’ feel. Children who are unable to express their feelings and have limited understanding may revert to earlier behaviours such as bed-wetting, may ask insensitive questions about the deceased, may invent stories about dying or may pretend death has not occurred.
Coping with children’s grief can be stressful for a bereaved parent. Take extra time to talk honestly with them about death and the person who has died. Help them work through their feelings and remember that they are looking to adults to model suitable behaviour.
Allowing children to express themselves in creative or active ways can help them process their emotions without the pressure of having to verbalise how they feel. Art therapy, play therapy, or encouraging vigorous exercise are all healthy ways for children to process how they feel.
Many children worry that they will forget the person they loved. To help, give them a photo or personal item belonging to their loved one that they can keep for themselves.
Support services and groups
Resources
Living with and talking about cancer:
Talking to Children about Advanced Cancer and End of Life: The Importance of Honesty and Compassion provides useful information on common reactions, frequently asked questions and finding the right words and explanations for children, teenagers and young people.
Living with Advanced Cancer, Cancer Council provides a valuable insight into ways to speak with children about advanced cancer and the impact it may have on their lives.
Grief support:
Bereavement and Grief – Mental Health America
Helping Children Grieve for a Loved One -Catherine Wilson
