A beautiful goodbye Being told there is no chance you will recover from your cancer is a devastating blow. But there are things you can do to turn this into a time of tenderness, fortified by respect and enriched with love.
How you're feeling The realisation that nothing more can be done to stop the spread of your cancer is likely to be a shock. As the shock begins to recede, it will probably be followed by painful and powerful emotions. Early on you’re most likely to turn to your loved ones for comfort (and they to you), but after a while you might want to talk to someone outside your family. Your care team will be able to put you in touch with a counsellor who understands what you’re facing. If you do plan to speak to a counsellor, you may want to mention it to the people closest to you so they don’t think you’re upset with them or that you’re excluding them.
If you have advanced cancer you may be offered treatment to control your symptoms and slow the spread of your cancer for months or even years. For some people, this is the right decision. Others may feel that they don’t want to go through any more treatment or deal with any more side effects. For them, the right decision is to end treatment and concentrate on enjoying the best possible quality of life for the time available to them. Every cancer patient has the right to decide when to stop treatment. You can discuss your decision with the people close to you, and with the members of your care team.
How others are feeling The news that shocked you will also affect the people who love you. They may struggle to know what to say and how to behave. They may react by being overly serious, excessively cheerful or avoiding you altogether. Such reactions don’t always represent people’s true feelings. A word from you could be all that’s needed to help them start communicating genuinely and directly with you.
Looking back... You may start thinking back on who you are and what you have done. You may pull out old photo albums and boxes of letters. You may talk to the people around you about things you have done together and the times of great joy or great sadness you have shared. You may even feel a strong urge to contact people you haven’t spoken to in years. And if you’re well enough to travel, you may find you want to visit the landmarks of your life, like your old school or the family home. These memories can be deeply comforting both for you and the people around you.
...and looking ahead When you think of the future, you may grieve for the things you’ll miss out on. You may be deeply affected by knowing you won’t be there to share important moments with the people you love. You may find it helpful to talk to those people about how you’re feeling and what you’re thinking. Or you might want to write letters or make video recordings. Doing those things could prove distressing, but you may feel a tremendous sense of achievement afterwards.
Care at home As your condition progresses you’ll want to be close to the people you care about, but you’ll also want to be as comfortable as possible. If your symptoms can be managed at home, then you have the option of spending your time in that very familiar setting.
Changing the floor plan You may begin to get more tired and you may need to have several naps during the day. If you want to feel like you’re part of what’s going on in the house, think about buying or hiring a recliner chair, or even rearranging the living room furniture to make room for your bed.
Ring your bell There will be times when your carer is out of sight, in the kitchen or the laundry or the garden, and you’ll need to call them for assistance. An old-fashioned bell may do the trick. Another alternative is to buy a wireless doorbell kit from a hardware store; you can keep the buzzer close at hand and your carer can slip the speaker into a pocket.
Get the gear If any bodily functions are proving a problem, there’s probably a gadget or device that will help. Things like wheelchairs, commodes, bed sticks, incontinence bedding, specialist mattresses to reduce the risk of pressure sores and more are available for sale or hire. Speak to your GP or your community nurse or call the Cancer Council Helpline on 13 11 20.
Hooking into support Care at home is supported by a number of government and community agencies. Through these agencies you can access things like medical care and advice as well as domestic help. For more information see “Palliative care” below.
Complementary therapies You may be feeling stressed and anxious, and that can disrupt your sleep, exacerbate your pain and make it hard for you to enjoy your time with your loved ones. Massage, aromatherapy, meditation and relaxation exercises can help. To find out about appropriate services in your area, call the Cancer Council Helpline on 13 11 20.
Night care At some point you may need care around the clock for things like getting to and from a toilet or taking painkillers during the night. Those closest to you may want to help you every hour of the day, but it’s important that they maintain their own health with regular breaks. Think about asking someone to sleep in a spare bed close to you to tend to your needs overnight. This could be a roster of family members or close friends, or you could hire someone from a care agency.
Get the message through There may come a time when speech is difficult for you. Consider typing up some common requests and directions on a piece of A4 paper: things like “Yes”, “No”, “I’m thirsty”, “I’m cold” and “I’d like to go to bed”. Print it out and get it laminated. Then you can just point to the words you want to say to get your message across.
Nourishing meals You may find that chewing and swallowing become a problem. When that happens, you may want to start taking ready-made liquid meals that provide you with all the nutrition you need. Your care team or community nurse will be able to tell you where to get these.
Staying hydrated Keeping hydrated with small amounts of liquid will help keep you comfortable. You can sip liquids such as water, tea, juices or soft drinks. If you prefer, you can suck on blocks of ice or pieces of fruit (pineapple is particularly refreshing). Icy poles are another option.
Care away from home Sometimes it’s no longer practical to stay at home, but that doesn’t mean losing contact with those who love you.
Hospices Residential facilities that provide palliative care are called hospices. Their expertise lies in controlling symptoms including pain and providing a supportive environment for the patient and the people close to them. You may choose to spend a few days or weeks in a hospice to get symptoms under control or to give your carer a break, and then return home. Or you can choose to spend your last days or weeks there.
Hospitals If your condition deteriorates, you may go back to a hospital bed for further care. If your hospital has a palliative care ward, you may be moved there, away from the hustle and bustle of an everyday ward.
Your people Moving into a hospice or hospital doesn’t mean losing touch with your loved ones. These days hospitals and hospices will make room for family and friends so they can be with you at all times, even overnight.
Palliative care Palliative care is all about supporting you to have the best possible quality of life while you deal with your cancer. It’s available to anyone who is not responding to cancer treatment, no matter if they’re expected to live for many years or just a few months or weeks.
Getting access When your care team explains to you they can no longer help you recover from your cancer, they will probably give you a referral to a palliative care service. If that doesn’t happen, you can get a referral from your GP or community nurse.
An all-star team Your palliative care team is made up of medical specialists, nursing professionals and allied health workers. Your main point of contact is likely to be a nurse who will coordinate the services you receive. The nurse will pay particular attention to symptom management. A doctor, either your GP or a doctor associated with the palliative care team, will be responsible for helping you make decisions about the treatment you’re getting, and for writing any prescriptions you need. You will also have access to social workers (who can help you manage legal, financial and domestic issues), counsellors or psychologists (who can support your emotional wellbeing), and occupational therapists and physiotherapists (who can show you techniques to help you manage at home and tell you about equipment or devices to make life easier).
Using palliative care You will have access to palliative care services for as long as you need them. In the early days, members of your palliative care team may spend some time with you to make sure that you have all the resources, care and equipment you need in your own home. After that they may visit once or twice a week to monitor your health and check to see that you’re feeling comfortable. The support you’re getting from your palliative care team can be adapted to suit your condition as it changes. If at some point it’s not possible to care for you at home, your palliative care team can help you move to a hospital or hospice. When your condition stabilises, your team can make arrangements for you to return home.
Ongoing medical care The primary goal of palliative care is to make sure you are comfortable. Often the management of your symptoms will involve drugs to treat things such as constipation, nausea and insomnia. It may also include chemotherapy or radiotherapy to slow the growth of tumours.
Pain management You may not experience any pain, but if you do you will be offered pain relief. That may come in the form of drugs delivered as pills, liquids, patches, suppositories or injections. It may take a little time for your palliative care team to work out which drug is right for you, and in what dose. You could also talk to your palliative care team about other options including massage, meditation and acupuncture. In most cases, your pain will be eased.
Morphine and modern medicine Some people, particularly older Australians, worry that being offered morphine means they are close to the end of their lives. That’s not the case in modern healthcare. Morphine and other opioid drugs are used in various doses to manage pain and other symptoms and can significantly improve your quality of life.
Morphine and your progress Some people also believe that morphine masks the progress of their cancer. In some cases those people opt not to take the drug for fear of losing clarity about their condition. Your condition is monitored closely by your palliative care team. Your use of morphine for pain relief will not interfere with that process. With the help of your palliative care team you can be pain-free and also very aware of your condition.
Managing costs Basic palliative care is free in Australia, however you may have to spend money on hiring or buying specialist equipment. If you and your carer decide to get in some extra help and you hire a nurse through a care agency, you’ll have to pay for that. You will also have to pay for any complementary therapies you may choose to use.
Making decisions when you're sick There may be times when you’re not able to make or communicate decisions about your lifestyle or medical treatment. You may find that these periods come and go over a matter of months or even years, or you could find that you reach a point where you have permanently lost the capacity to make or communicate decisions.
The appointment of an enduring guardian gives another person the power to make those decisions on your behalf at times when you cannot make or communicate them yourself. This power only exists during those times when you cannot make your own decisions.
When you select someone to be your enduring guardian you will want to choose a person who you know is aware of your expressed wishes and who will make decisions in line with those wishes.
Those decisions usually include where you live and the type of medical treatment you’re receiving, but they can include other things if you note them specifically in the appropriate paperwork.
Managing your affairs when you're sick At some point you may get too sick to manage your day-to-day financial affairs. This doesn’t mean that you’ve lost the capacity to make decisions, it just means that the business of signing documents or getting to appointments is more than you can physically handle.
When you set up a power of attorney you give another person the authority to deal with your assets and affairs. It could be something as simple as paying bills or as significant as buying and selling property. Obviously, it’s important to nominate someone you trust. This role is sometimes called a non-enduring power of attorney or a general power of attorney. If at some time in the future you lose the mental capacity to make informed decisions, the power of attorney will be revoked.
An enduring power of attorney has a similar function, but it continues even after you have lost the capacity to make informed decisions (if that happens). An enduring power of attorney is a very important tool and the agreement must be witnessed by a solicitor or other approved person.
Each state and territory has its own laws about powers of attorney but a fundamental requirement is that you have full legal capacity when signing the document. That’s why it’s a good idea to consider these decisions early on and to get the appropriate legal advice.
Powers of attorney cease to have effect when you die. That’s when your will takes over as the document which dictates what is to be done with your assets.
Making your choices clear An advance care directive (sometimes called a living will) is a written statement in which you set out your wishes for future treatment and care. In it you can specify if you want to be given life-sustaining treatments like intravenous feeding, if you want to be resuscitated in the event your heart stops, if you want to donate organs after your death and so on. You may want to talk to your family and even your care team or GP before writing your advance care directive.
You or your carer should make sure that your advance care directive is somewhere it can be found quickly in an emergency.
An advance care directive is your reassurance that you have made your wishes known. However, it’s possible that circumstances will develop that are not covered by your statement. You may decide that the legally binding appointment of an enduring guardian (see “Making decisions when you’re sick”) who understands your point of view delivers more flexibility and ultimately more security.
A carer's role Where once your carer was focused on helping you with the practicalities of your treatment, now they’re likely to be providing you with much of the personal and nursing care you need. Your carer will also be trying to support your emotional needs, while dealing with their own feelings of fear and grief.
Hands-on care As your strength decreases, you may need help with things like dressing, washing and toileting. Your carer may feel great satisfaction in being able to give you such personal care. However, these can be very physical tasks and carers should be careful not to cause themselves an injury. Get advice from the palliative care team about techniques and equipment that can make these tasks safer and more comfortable for both of you.
Handling medications Your carer may now take on the responsibility of managing your medications. It can be very important for these medications to be taken consistently and at exactly the right time. Ask your local chemist to put pills into a weekly organiser, sometimes called a Webster-pak. Your carer may also need to learn how to give you an injection or insert a suppository. If they’re not comfortable or confident with those tasks, let your palliative care team know.
Sourcing help A carer may have to look after many administrative tasks including organising and overseeing palliative care, tracking down government payments, moving money through Medicare or private insurance funds and so on. These tasks can be enormously time-consuming and stressful. It might be better to ask another friend or family member to take on these duties while your carer looks after your physical and emotional needs.
Managing symptoms Your palliative care team will make regular visits to monitor your health, but sometimes new symptoms may develop between visits.Both you and your carer will be on the lookout for those symptoms but it will be up to your carer to source the assistance you need to manage the symptom. Sometimes you’ll get the advice you need over the phone from the palliative care team. At other times, you may need to get an appointment with your GP.
Company There’s plenty of practical work to be done at this time, but the most important thing a carer can do right now is simply to be with you. You’ll both appreciate the time together to talk, to think, to share memories and to support each other with love.
When carers need help You and your carer may want to rely on each other as much as possible at this time, but there will be occasions when your carer needs help and should feel comfortable about asking for quick assistance from either your GP or your palliative care team.
Pain and discomfort You may get used to a certain level of discomfort during this time, but it’s important to get help if the discomfort escalates to such a point that you find yourself grimacing or moaning, or if you’re experiencing intense pain that is not eased by the pain relief available at home.
Breathlessness A little shortness of breath may be something you learn to live with, but if you start finding it very hard to get a good breath and you’re beginning to feel distressed, call for help.
Falls Not everyone is fit enough or strong enough to lift an adult’s body weight. If you’ve had a fall and you can’t help yourself get up, your carer may need to call for help from a nearby friend or neighbour. If the situation is serious, it may be necessary to call an ambulance.
Body functions If you aren’t able to urinate or have a bowel motion, you need the attention of your GP or palliative care team.
Medications Delivering medications, particularly things like injections and suppositories, is a difficult task. If your carer isn’t able to do it successfully, it could mean that you’re not getting the drugs that will ease your pain and other symptoms. Your palliative care team can step in so that you don’t miss out on the medications you need.
Feeling overwhelmed A carer’s responsibilities at this time are enormous. Even if you and your carer are committed to the idea of managing your own care, you may reach a point where your carer doesn’t have the strength or the skills to give you the care that you need. Getting some help with practical and medical issues means that your carer will have more time and energy to dedicate to your emotional needs.
Writing a will A will indicates what you would like to happen with your property after you die. If you don’t have a valid will, the people you want to benefit may miss out.
A will is only valid if you had legal capacity at the time that you signed it – in other words, if you had the mental capacity to understand what you were doing and make informed judgments. As your cancer advances, your legal capacity may be affected, so it’s important that you write a will or make changes to an existing will sooner rather than later. If you don’t, a disgruntled person may challenge your will after you die by arguing that you did not have legal capacity when you made it.
What gets covered Be aware that your will only covers property that you own. The proceeds of life insurance and superannuation may not be covered by your will. Also, any property you own with another person as ‘joint tenants’ as well as any property owned by a family company or family trust won’t be covered by your will.
Choosing an executor As part of your will, you’ll need to appoint someone as an executor. The executor has the responsibility of putting the wishes expressed in your will into practice. You can name a family member or close friend as executor of your will, even if they are one of your beneficiaries.
Setting up a trust You can leave everything to one person or a number of people, or you can leave specific assets to particular individuals. You can also create trusts in your will. These are legal arrangements where a nominated trustee manages assets on behalf of another person or group of people. They’re often used to protect the assets of children under the age of 18.
Getting help Wills are complicated legal documents and while you can use a shop-bought will-making kit to write one, you’d be well advised to get one drafted by a solicitor. High-value properties and sophisticated investments aren’t the only things that can make a will difficult to administer: it can also come down to complicated relationships including having children from more than one relationship. If you don’t have the funds to cover a solicitor’s fees, approach the Public Trustee in your state (for contacts, see “More help” below). The Public Trustee will be able to advise you on how to draft a legal will and may even be able to draft one for you at minimal cost.
Words to know
Advance care directive a written statement that sets out your wishes for future treatment and care
Advanced cancer cancer that has spread from its original site to other parts of the body
Enduring guardian a person appointed by you to make decisions about your lifestyle and medical treatment when you are not able to make or communicate those decisions yourself
Enduring power of attorney a legal document that permits another person to make legal and financial decisions on your behalf when you are not able to make or communicate those decisions yourself
General or non-enduring power of attorney a legal document that permits another person to handle legal and financial matters on your behalf; the power is revoked at such time as you are no longer able to make or communicate your decisions
Hospice a residential facility providing palliative care
Palliative care treatment to relieve symptoms without trying to cure the cancer
Will a document that indicates how you want your assets to be distributed after your death
Expert's insight: Josephine Clayton Josephine Clayton is an expert in palliative care and works as a staff specialist at Sydney’s Greenwich and Royal North Shore Hospitals and an associate professor at the University of Sydney.
“Whether or not a carer can look after a person at home during their final days depends on the physical circumstances and their resources. If the symptoms are under control and the family is able to manage the costs, it is an alternative. You should be linked in with your GP and palliative care service beforehand.
“The role of the carer is dictated by the sort of relationship they have with the person who has cancer. Some people may feel fine about being very hands-on, even giving injections for pain if and when required. Others may find that a difficult job to perform.
“If you’re in a specialist palliative care unit or in a main hospital, family members can stay overnight. Staff waive visiting hour restrictions when someone is imminently dying.
“As death approaches, a person with cancer is likely to spend more time in bed. They may be less aware of their circumstances and surroundings. Their breathing might become irregular and there may be changes in the skin. People often gradually fade away, but some people suddenly die with a complication or they might just pass away in their sleep. Everyone is different, but the person may go into a semi-conscious state before death.
“If it’s an expected death, there’s no hurry to call anyone, and you may like to spend time with the person. Emergency services don’t need to be involved at all when it’s an expected death from advanced cancer. Your GP or the hospital’s medical officer may need to be notified so that they can certify that the person has died.
“Carers sometimes feel they have to battle on their own when death is close, but there is help out there. Involve your GP and get linked to palliative care services early so you can get all the information and support in advance.”
Expert's insight: Petrea King Petrea King from the Quest for Life Foundation offers some ideas on helping your children say goodbye.
“Even very young children often have a sense of death when their parent has advanced cancer. Children are extremely sensitive to the atmosphere around them. It is better to explain to them what is happening than leave them wondering or, worse, with questions after you have gone.
“Besides talking about the practicalities – for instance, they need to know who will love and care for them after you are gone – you will also want to address the moment of dying.
“You can use nature to describe the cycles of life – cicadas leaving their casings, butterflies emerging from a cocoon, autumn leaves making way for growth in the spring.
“Perhaps use the analogy of a balloon to help your child understand that it is the spirit within the body that makes us special. When the air goes out of the balloon we are left with a piece of coloured rubber. What makes it beautiful is the invisible air inside. Your spirit is the sparkle in your eye, your smell, the warmth of your smile and the love in your hugs. It is everything that’s beautiful, singular and special about you.
“When your spirit leaves your body it goes into everything beautiful and surrounds your child forever. They can breathe your love into their heart whenever they think of you.
“Children may not understand what your spirit is but in this way they can understand that though it’s something invisible, we know when it’s gone.
“Let them know that love never dies. Children need to know they can continue loving you and having a relationship with you even though you’re no longer physically present. The rainbow can be a powerful symbol of this emotional and spiritual connection and young children can imagine sending you love across the rainbow.*
“Teenagers may find it helpful to express their love for you by planting a tree, writing a letter or making a DVD; and you, writing a letter telling them what you love and admire about them, leaves them a treasure for life.”
* For more on Petrea King’s rainbow ritual see Life with kids.
CareSearch (08) 7221 8233 www.caresearch.com.au Provides online information on palliative care and has links to local care networks.
Home Hospice 1800 132 229 www.homehospice.com.au Home Hospice offers free peer-to-peer mentoring services to people supporting a loved one with a terminal illness who wants to die at home. Mentors offer emotional support, information and guidance, by phone or face-to-face.
Palliative Care Australia 1800 660 055 www.palliativecare.org.au There are a number of brochures to download on this website, including “What is palliative care?”, “Facts about morphine and other opioid medicines used in palliative care” and “Asking questions can help: an aid for people seeing the palliative care team”. These are available in a variety of languages including Arabic, Greek, Italian and Vietnamese. Go to the website and follow the links to Resources > Consumer resources.
DR IAN DAVISON When Ian Davison asked his wife, Harriet, how she wanted to spend the days ahead, she replied, “I’m doing what I want to do; I just want to keep doing it for as long as possible.”
A respected alpaca breeder, Harriet exhibited her alpacas at Sydney’s Royal Easter Show just days before she passed away with ovarian cancer in 2010. Ian, an orthopaedic surgeon, now runs the farm they established together.
“Harriet was a phenomenally hard worker. She was passionate about alpacas and would be with them around the clock. I first noticed she wasn’t quite right when she’d come in short of breath and needing a rest. She’d also talked about feeling bloated.
“I felt uneasy but, being a doctor, I resisted panic and considered some undergraduate advice, ‘When you hear the sound of hooves, don’t look for zebras.’ I waited patiently for GPs to provide a simple explanation. She had further investigations and that’s when our world came crashing down.
“We told the kids the diagnosis and gave honest answers to whatever questions they asked, but they avoided questions on life expectancy. Not even Harriet really knew that. I knew the likely scenario.
“As carers, our role is to salvage whatever reasons for optimism and happiness, however trivial, we can dredge out of the wreckage and share it with our family and friends.
“Equally, we have to shield our partners from despair and despondency. I would advise friends not to enquire of Harriet ‘How are you?’ because the honest response was best left unstated. Instead, I kept a journal of our experiences, thoughts and impressions, which I circulated by email so they never had to ask. That way, they were kept fully informed and given the opportunity to limit their communications to positive messages of love, humour and support. The importance of receiving the sympathy and good wishes of those people can never be underestimated.”
Photo by Bruce Daly
ROBYN SPILLANE Marie O’Brien was diagnosed with breast cancer in 2009. Later, she moved in with her sister Robyn Spillane who helped care for her through her last months.
Marie was one of 10 children, and the family saw her funeral as an opportunity to celebrate her enthusiasm and love of life. She left behind two daughters, Nicky, 28, who lives in Hawaii, and Michelle, 25, who lives in Dubai, as well as a grandchild, Mahlin.
“Marie’s illness was like a tidal wave – it was so fast and so sudden. In the last four months, she moved in with us. She wanted to come home and we had always had a real connection. By that time it had spread to her hips, her sternum... Four days before her death she moved to St Vincent’s hospice in Sydney. It is one of my biggest regrets, but we couldn’t lift her.
“When she died, two of my sisters were there, as were some of her friends and her daughters. Nicky had given birth to a daughter four days before so Marie was able to meet her first grandchild.
“I do remember that just before she died I felt her spirit, her energy, like a love and warmth coming down on me. Then her body just shut down. I didn’t feel scared for her any more. But, after her death, I was very angry, then depressed. I couldn’t feel her around me. Now I do, and I talk about her all the time.
“After Marie’s funeral, we picked up her ashes from the crematorium and sprinkled them over Balmoral Beach. I go walking there and think of her. It is a healing thing. Her funeral itself was a celebration of her life – we laughed and we cried, we talked and we sang. None of it was morbid. She even put together her own music.
“Today we have a bench for Marie in Melbourne, by the river, where people come and sit. It says, ‘Marie O’Brien, a powerful and inspirational woman’. That’s how we remember her – for the person she was, not the illness. For the laughter and the love.”