What is palliative care?
To palliate comes from the Latin and means to relieve or lessen, but without curing. Palliative care is the profession that aims to provide relief of suffering associated with a terminal illness. The first person to use the term palliative care was a urology surgeon, Dr Balfour Mount, in Canada. He established the first hospital-based palliative care service in 1974, and the reputation of excellence in managing pain and other end-of-life symptoms quickly spread.
What is hospice?
The word “hospice” comes from the Latin hospes, meaning to host a guest or stranger. The term was coined with the spread of early Christianity in Europe: Priests and nuns would welcome sick and weary travellers who could not care for themselves. Women in the sixth century who had previously had a limited role in wealthy society found a calling in ministering to the sick with the nuns and priests. Over time, a formal system of caring for the sick developed and the places of care were called hosp-itals
Broadly speaking, hospice care is a concept rather than a specific place. It is a philosophy which “states that there is always something to be done to help” (page 18, Palliative Medicine, Ed. Walsh, D. 2009). Care like this can be provided for a patient in their own home, in a nursing home, in a major hospital, or in a purpose-built hospice. The first time the word hospice was used to describe a place for end-of-life-care was in 1842 in Lyon, France. It was started by a woman, Madame Jeanne Garnier, who was grieving the death of her husband and child, and wanted to provide a place dedicated to care of the dying.
Both the history of palliative care and of the hospice movement demonstrate one clear thing–palliative care is active care. The World health Organisation recognises that palliative care is actively involved in improving the quality of life of patients and families, through easing suffering by the treatment of physical, spiritual, emotional and social problems (page 1, Therapeutic Guidelines Palliative Care, 2005).
How will I know when the end is near?
- If your loved one has advanced cancer, you might have noticed a gradual decline in their strength and ability to care for themselves. There may come a point when you notice that each week things are quickly “getting worse”. This change to a more rapid decline can signal that the end is approaching.
- You might notice that your loved one responds less and less to their surroundings.
- You might notice a drop in energy levels which don’t seem to recover.
- You might notice that your loved one becomes unable to move from the bed, and gradually that more and more of their care is done for them in bed (like bed bathing, toileting with a bottle or pan etc.).
- You might notice difficulty swallowing and a loss of interest in food or fluids.
- You might notice their breathing becomes irregular. In the few days before death, breathing often cycles between being fast and deep, and then becoming very slow so that it seems to have stopped. The “gaps” in between breathing are called apnoea (ap-nee-ah) and they gradually become longer and longer. This pattern of breathing has a special medical name called Cheyen-Stokes (chain-stokes) respiration.
Who do I call when my loved one dies?
Discuss these details with your GP or your palliative care nurse or doctor. The time of death can be distressing and you might forget who to call so keep a list of numbers on the fridge or somewhere easy to access. If the death is expected then there is no need to rush into calling anyone especially if the death occurs overnight. You might like to call a family member or friend to stay with you till the morning when you can call your loved one’s GP or the local palliative care doctor. Usually if you call the ambulance when there has been a death at home then the police must be called. This is obviously important for an unexpected death but for an expected death of a person under palliative care, then dealing with police at the death can be unnecessarily distressing.
Resources (from Care Search)
- The Department of Health and Families in the NT (Remote Health Atlas) has a Fact Sheet on Deaths-overviewwhich provides some useful information on procedures and responsibilities
- The Victorian Government has information for Nurses on verification of death(2010)
- The NHS (UK) National End of Life Care Programme has a support sheet on The Dying Process
- Palliative Care Victoria has a leaflet on About What to do when someone dies: A checklist
- Palliative Care QLD has a leaflet: About the process of dying: Information for carers
- Tasmanian Department of Human Services: Palliative Care, have a Fact Sheet on Dying at Home and Considerations after death
- The Better Health Channel has information on Post Mortems
- Information from CancerHelp (UK) on ‘Practical things you may need to do after a death’
How can I stop the Ambulance taking mum to hospital if we call them in a pain emergency?
Think about having a formal Advanced Care Directive that states clearly that your loved one is a “palliative” patient and does not want to be taken to hospital. Some people wonder why an ambulance would be called if they are not able to take the patient to hospital–but there is a great deal that skilled ambulance officers can do at home, including helping pick up someone after a fall and helping with pain and other symptoms. There are some ambulance crews (like the acute care paramedics in South Australia) who work closely with palliative care teams. Your loved one’s GP can also write a letter to keep at home stating their wishes. Show this to the ambulance. It might be best to let them know before they arrive what the situation is so that they can plan ahead.
Dad still sees the oncologist but now he has a palliative care doctor too–who is in charge?
The Palliative Medical Specialist might be involved from very early on in a diagnosis, or they might become involved more toward the end. Caring for someone who has advanced cancer sometimes requires a team of specialists who have expertise in different fields. Gradually, the Oncologist might come to rely more on the Palliative specialist as symptoms change. The Palliative Specialist can act as a central pin in the wheel: They are often aware from their home visits about the needs of your loved one. The various specialists communicate by letters or phone calls although sometimes this happens better than others. Also, some people might be having chemotherapy (the domain of Oncologists) right up until the days before their death. This is not usually aimed at being “curative” but can help relieve symptoms.
Some patients feel they are “letting their Oncologist down” if they refuse further chemotherapy. It is important to discuss what your loved one wants. the demands of chemotherapy can be demanding, time-consuming, and can cause pain and distress from nausea and fatigue. When the end is near your loved one might “need permission” to stop the chemotherapy because at this point it can cause more trouble than good.
I used to get blood tests done every day but now I rarely have them done–have the doctor’s forgotten?
As the illness progresses, it becomes more important for doctors to listen to what your body is telling them rather than what a set of numbers from a blood test says. It is inevitable that your blood tests will begin to show changes associated with the disease, but demonstrating this does not change anything. Some blood tests may still be important but you as a person are far more important. There is a general medical principle which sensibly says that there is more harm than good in doing a test if the outcome of the test won’t change your management. If blood tests are ordered by your doctor, don’t forget that “blood nurses” are able to come to the home to visit. Always return to ask yourself, “what are my goals of care?” If you have always said that you want to be kept comfortable and have any symptoms managed as well as possible, then this can mostly be done by making changes to treatment based on your symptoms.
One specialist said my son would have only 6 months left but that was 2 years ago–what happened?
There are few people whom I have looked after who have not been given a vastly “wrong” prognosis about when they might die. I have made many vastly wrong predictions also. It is very difficult to judge “how long is left”. There are changes we can look at (see above) but sometimes we see a pattern where a person may “go downhill” rapidly and appear as if they can’t take another breath–then the next day they have improved. This up and down process can go on for quite some time but usually the pattern is such that the “ups” are never quite as good as the previous time and the “downs” might be longer each time. The basis on which doctors estimate is usually from the understanding that each disease has a particular pattern which it follows. This, together with an assessment other underlying conditions, and the recent rate of decline can sometimes be useful in estimating the time of death. This estimate is often made very generally in terms of “hours to days”; “days to weeks”, or “weeks to months”.
What is an advanced directive?
An Advance Care Directive is a written document stating what your loved one wants for their future health care. An Advance Care Directive can be made by anyone who has the capacity (competence/ wellness of mind) to do so. An Advance Care Directive is only used if, at some point in the future, your loved one becomes incapable of making health care decisions for themselves (due to illness or injury). There are forms which are available for free on-line (created by the health department in your state) or you can phone the Office of the Chief Medical Officer, Department of Health, in your state. You can make up your own form but this can be difficult.
New South Wales
Enduring Guardian/Power of Attorney
- NSW Appointing an Enduring Guardian Fact Sheet
- NSW Enduring Guardianship Form
- NSW Enduring Power of Attorney Form (Also Available from the NSW Guardianship Tribunal web site)
Advance Health Directives
- Writing an advanced directive
- NSW Advance Health Care Directive Fact Sheet
- NSW Advance Health Care Directive Form
- NSW Advance Health Care Directive Form – Short Version
- Advanced Health Directive
- Qld Advance Health Care Directive Form
- Qld Enduring Power of Attorney (Long Form)
- Qld Enduring Power of Attorney (Short Form)
- Medical Enduring Power of Attorney (MEPOA)
- Vic Advance Care Plan – Competent Person
- Vic Advance Care Plan – Non Competent Person
- Advanced Care Palnning – general
- End of Life Planning
- TAS Enduring Guardianship Info
- TAS Enduring Guardianship Form
- Tas Advanced Care Directive
What is a living will?
A living will is the same as an “advanced directive”.
What is Power of attorney?
Generally speaking, this is a legal document appointing someone of your choosing to manage your financial affairs in certain situations while you are still able to manage your own affairs. For example, if you were going overseas or into hospital for a time, signing a power of attorney lets someone you trust to legally act on your behalf while you’re away. Your loved one might already have one in place which would allow you or a person of their choice to manage their finances. You should think about getting a solicitor to prepare this although “do it yourself” kits are available. Check out your state government website.
Will those strong pain medicines like morphine shorten Grandpa’s life?
The experience of palliative specialists and pain specialists (like anaesthetists) is that opioid medications (like morphine) can be comfortably used in doses needed to relieve pain or other symptoms–and that these medications are rarely the primary cause of death (Journal of Pain and Symptom Management Vol. 32 No. 6 Dec 2006). Strong medications like morphine are started in very low doses and doctors watch to see what the response is before increasing them–if there are problems then the medications are adjusted back down or changed. Studies of the relationship between opioid use and time to death in patients with advanced illness found no significant relationship (eg. Good, PD., Ravenscroft PJ., Cavenagh, J. Effects of opioids and sedatives on survival in an Australian inpatient palliative care population. Intern Med J 2005; 35 (9): 512-7 and Morita T., Tsunoda J., Inoue S., Chihara S. Effects of high dose opioids and sedatives on survival in terminally ill cancer patients. J Pain Symptom Manage 2001; 21 (4): 282-9).
My friend is a student pharmacist and she says that opiates like morphine cause respiratory depression. Is this true?
Opiates do have the ability to cause respiratory depression when used inappropriately. But when used in small doses and gradually increased to treat pain or breathlessness, studies show that it is rare for them to cause breathing problems. This common belief about them depressing breathing came from a paper published in 1941 (see Edwards, MJ., opioids and benzodiazepines appear paradoxically to delay inevitable death after ventilator withdrawal. Journal of Palliative Care. 2005; 21 (4): ProQuest). The researches made some conclusions about opiates which seemed logical but have since been found to be questionable. Unfortunately the stigma associated with opiates and death has persisted. This has sometimes meant that patients are not given adequate pain relief because junior doctors and family are worried about causing breathing problems. Of course opiates are medications which must be used under medical supervision and if used carelessly or at inappropriate doses then over-sedation or death can result. But this is true will nearly all medications–even good old paracetamol (panadol).
A review article in 2002 found that opioids (like morphine) could be used safely for symptoms like breathlessness, even when severe heart and lung disease was present (Thomas JR., Von Gunten CF. Clinical management of dyspnoea. Lancet Oncol 2002; 3 (4): 223-8). A UK study showed that the respiratory rate was not changed by morphine given for breathlessness to people who had poorly functioning lungs (Boyd KC., Kelly M. Oral morphine as symptomatic treatment of dyspnoea in patients with advanced cancer. Palliat Med 1997; 11(4): 277-81).
What happens when Nanna can’t swallow any longer?
This might happen in someone who has a tumor blocking the passage which food goes down (the oesophagus). It often happens when death is near due to overwhelming muscle weakness and fatigue, or unconsciousness. If someone is otherwise feeling ok and a tumor is clogging the oesophagus then a stent or laser or radiotherapy can be used to open up the blocked passage. The tumor often comes back though. If your loved one is too weak or too tired, or too breathless to swallow, then some medications that have been given by mouth can be stopped completely, and others can be changed to an injectable equivalent and given via a small “butterfly” needle which sits comfortably under the skin. This needle is put in by nursing staff and is usually changed every 3 days. If you feel confident, the nurses can show you how to give medications like this. Small amounts of fluid can also be given like this–although often by this stage giving continuous fluids can cause problems with swelling (oedema, pronounced ee-dee-mah) and can worsen pain.
See the page nourishment for information the dying body’s changing needs for food and fluids.
I never have time alone with my husband–there are visitors and family here all the time. He gets tired and we miss having some space but he is too tired and sick to say no. What can we do?
You might have access to a palliative care social worker or psychologist to discuss this with. You could think about thanking your visitors and relatives for their time and energy and letting them know that your loved one has asked for some time alone at the beginning of each day (for example). If you are worried about this then talk to your GP or palliative care doctor who can help also. When too many visitors are a problem for a patient and their partner, I have sometimes spoken to families and explained that from a medical point of view, too much stimulation is unhelpful and that “quiet times” are “prescribed” for the patient and partner where visitors are restricted. This takes the focus off you, although the option of being brave and communicating your needs openly is often best. Also remember that you are not obliged to answer the door or the phone! Have a note pad on the door where people can leave messages. Put a sign on the door stating visiting hours. Leave the phone off the hook or turn off your smart phone so that you can get some alone time. You could also book some time out at a hotel that caters for wheelchair access etc.
My sister says we have just “given up” because we are not looking at alternative therapies. There is a company overseas who makes a special medication for cancer and they say they have a 100% success rate. We would have to mortgage the house to pay for it but I couldn’t live with myself if I didn’t do everything for John. What should I do?
Many complementary therapies have a lot to offer and many complementary therapists have backgrounds in science or have studied a long time to get their qualifications. Western Medicine is not the be all and end all. An old adage says “lack of evidence is not evidence of lack”. However, there are many unscrupulous people who because of their convincing personalities are able to take advantage of the unwary. Everyone knows that the thing people want most of all is long life and health and time with loved ones. Most people would “do anything” to secure this: So when we are suffering with the grief of a terminal diagnosis, it is no surprise that we are drawn to anything that promises a cure and unscrupulous people are drawn to prey on those in need. Generally you can be sure that cancer research is a massive industry and that if a pharmaceutical company had come up with the goods (or was aware of someone who had) then we would all know about it–especially your oncologist and other specialists with a genuine interest in this area.
If you are interested in complementary medicine, have a look at the National Cancer Institute webpage on complementary therapies.
Who organises the death certificate?
The death certificate is an important legal document and is needed so that the funeral director can make arrangements for the body. The death certificate is sent (usually by the doctor) to the Registrar of Births, Deaths and Marriages. It may take several weeks before you get a copy of the certificate.
The doctor who was either responsible for your loved one’s medical care immediately before death, or who examined the body of your loved one after death can complete the death certificate, provided the medical practitioner is ‘comfortably satisfied’ as to the cause of the death and no other circumstances are present which require the death to be reported to the Coroner. Palliative care doctors who have been involved in home visits are also able to complete a death certificate. Normally funeral arrangements cannot be completed until the doctor has signed and issued a Death Certificate. The Funeral Director can then take your loved one into their care.
Once you get the death certificate make sure you get a number of certified copies ASAP. Many local libraries have a JP (Justice of the Peace) who can certify the certificate for you. You GP or local police officer can also certify your certificates. You keep the original and give a copy to the organisations who request one.
How do I arrange my affairs after my husband dies?
A number of people and organisations need to be notified when someone dies. It will help if you have important reference numbers, such as your loved one’s Tax File Number, Centrelink Access Number, Medicare number and bank account numbers. If you have an Enduring Power of Attorney in place already then you will be able to operate your loved one’s financial affairs on their behalf before they die.
Some organisations may need a copy of the Death Certificate. While it may take several weeks to get a copy, organisations should be notified of the death as soon as possible.
See the Australian Government Department of Human Services webpage on What To Do Following a Death for information on the Pension Bonus Bereavement Payment, the Widow Allowance, and for information on free counselling and financial services. Remember that you can apply for your superannuation to be released early on specific compassionate grounds or if you are in severe financial hardship.
Here is a list of people and organisations you may need to contact to advise of the death of your loved one:
- Phone service/ Internet service
- Life Insurance/ other insurance
- Department of Transport
- Australian Taxation Office
- Your loved one’s accountant
- Bank and financial advisor
- Your local library if they were a member
- Friends/ relatives overseas (think about having some pre-printed cards so you don’t have to write lots of letters)
- Professional/ academic organisations of which your loved one was a member
- Local church/ synagogue/ parish if you loved one had been involved (they may also be a good support to you at this time and often provide access to counselling and other support services)
- ACAT (aged care assessment team) phone: 1800 200 422
Don’t forget about the Financial Information Service (FIS) which is a free, confidential service that provides education and information on financial and lifestyle issues to all Australians. The information you get from the service can help you:
- understand your financial affairs
- learn more about investing
- learn how to save and plan for the future
- learn more about shares, property, salary sacrificing, and superannuation
- start planning your retirement and understand the options available
- understand the financial implications when you, or someone close to you, is considering moving into residential care
- use credit in a sensible way.
What services are available to help me look after my wife at home?
Your local palliative care team will be able to tell you about services in the area. They are often able to make referrals and arrangements on your behalf. Your GP may also be aware of support services.
1. The Commonwealth HACC Program
The Commonwealth HACC Program provides services that support older people to be more independent at home and in the community. Some of the services provided under the Commonwealth HACC Program include:
- nursing care
- allied health services like podiatry, physiotherapy and speech pathology
- domestic assistance, including help with cleaning, washing and shopping
- personal care, such as help with bathing, dressing, grooming and eating
- social support
- home maintenance
- home modifications
- assistance with food preparation in the home
- delivery of meals
- assessment, client care coordination and case management
- counselling, information and advocacy services
- centre-based day care
- support for carers including respite services
Commonwealth HACC services are available to people:
- aged 65 years and over (or 50 and over for Aboriginal and Torres Strait Islander people),
- in all states and territories (except Victoria and Western Australia),
- who are at risk of premature or inappropriate admission to long term residential care
The best way to find out what HACC service providers are operating in your area
is to call 1800 200 422.
2. The National Respite for Carer’s Program
The National Respite for Carers Program (NRCP) allows carers of older people, people needing palliative care and people with disabilities to have a break to look after their own health and well-being, with the comfort of knowing that their dependants are well looked after. A range of community-based and residential respite is available and includes:
- day care centres that provide respite for a half day or full day
- in-home respite services, including overnight, home care and personal care services providing respite and support
- activity programs
- a break away from home, perhaps with a support worker
- respite for carers of people with dementia and challenging behaviours
- respite in a residential aged care home or overnight respite in a community setting, and
- respite for employed carers and for carers seeking to return to work.
Access to respite care is based on priority and need. The amount of care you receive will depend on your needs, your eligibility, and the availability of respite care services. You can contact 1800 200 422 during business hours for more information.
Community-based respite services charge fees according to the type of service being used and your ability to pay. These can vary from a sessional fee for a morning or afternoon in a day care centre, to an hourly rate for in-home respite.
3. Meals on Wheels
If you have difficulty preparing meals, food services can deliver meals (fresh or frozen) to your home or local care centre. These meals can even be tailored to your needs if you or your loved one has specific dietary requirements for health, religious or cultural reasons. The level of support you receive from food services varies, depending on the support you have at home. Usually they are able to deliver one main meal a day and extra meals on Friday for the weekends. The meals consist of a soup, a drink, a main course and a small dessert. The Australian Meals on Wheels Organisation encourages and supports the involvement of volunteers around the country so if you live in a small community then the local church or CWA may be the provider of the service.
4. In some states the RDNS (Royal District Nursing Service) are able to provide help at home through funding packages. You are also able to pay privately for nursing or carer support (for example a nurse at night time would be able to give medications and help with showering in the morning).
5. Your local council may be able to provide a list of services in your area, as well as cleaning or garden maintenance services.
6. Dont be afraid to ask friends and relatives for help at this time.
What Financial assistance is available?
Financial assistance is available from centrelink in many forms including:
- the Disability Support Pension, available for people who are unable to work for a prolonged period of time because of a disability
- the Mobility Allowance, paid to eligible disabled workers to meet the extra cost of travel
- the Carer Payment, which provides an income support payment (similar to a pension) for people whose caring responsibilities prevent them from significantly participating in the workforce, and
- the Carer Allowance, which provides an income supplement for people who provide daily care and attention at home for an adult or child with a disability or severe medical condition.
Centrelink can also help with information about Rent Assistance, the Age Pension and concession cards. It also provides the Financial Information Service, a free and independent financial planning service available whether or not you’re receiving a pension or benefit.
What Happens if I suddenly Get Sick?
Emergency respite care is available. Contact 1800 200 422 during business hours or, for emergency respite support outside standard business hours, call 1800 059 059.
Your local palliative care hospice may also be able to help in this case. You should contact your palliative care community nurse, or your loved one’s GP for assistance ASAP.