Spending your final moments of life surrounded by family, in your own comfortable bed or chair, with a loved one’s hand holding yours, is the rosy picture most of us prefer to draw when we picture the end of life – if we picture it at all.
When surveyed, up to 70 percent of Australians say they’d prefer to die at home. The truth, however, is that just 14 percent achieve this idealised scenario.
“It’s a bit like home births,” Jolene Hill, founder of Your Life Assist, says. “You can research and make as many plans as you like, but circumstances can arise that are not expected or easily manageable.”
What you can control, however, is the type of health care you receive at the very end of your life, through carrying out advance care planning.
Likewise, you can ensure that your experience of the end of life is as pain- and trauma-free as possible by understanding palliative care services, including how they can help you die in comfort at home.
In simple terms, palliative care aims to improve the care, and thus the quality of life, for people diagnosed with a life-limiting condition.
Palliative care doesn’t just involve treating the physical symptoms of the illness, but also its psychological and emotional impacts. Palliative care is focused on providing you with as much relief from pain and suffering as possible, as well as ensuring that your family is supported during this difficult time. That can be through the provision of medication, therapies, home help, counselling or spiritual support.
A 2017 Productivity Commission report found that the end-of-life care provided in Australia was among the best in the world.
But Jolene Hill, who founded Your Life Assist to provide no-cost information to Australians about end-of-life planning after losing her husband to cancer, says many people have misconceptions about how palliative care works, which could prevent some from accessing this vital service.
One of the biggest misconceptions about palliative care is that it is intended only for the last weeks or days of life and that it is focused on the administration of pain relief. In fact, Hill says palliative care is valuable throughout what can be the lengthy progression of an illness.
“Palliative care is not just care provided in the final stages of life, as it can also be of benefit to a person at their initial diagnosis or be useful at intervals through the various stages of the illness,” she explains. “Many people have a long-term involvement with their palliative care team during the course of their illness.”
Palliative care doesn’t hasten your death
“Studies have shown that people with advanced illness who receive palliative care have improved quality of life and have, in fact, been shown to live longer than people with the same advanced illness who do not receive palliative care,” Hill says.
You’re not required to stop active treatment of your condition in order to receive palliative care. Nor it is a sign your doctor or healthcare professional has ‘given up’ on you; a referral to palliative care services is about allowing you to live all aspects of life as well as you can for as long as possible, not an attempt to stop treating your condition.
Palliative care can be delivered in your home, a hospital, a residential aged care home or in a hospice.
With the federal government and the Queensland Government each contributing to the cost of various palliative care services, services are generally free to Queenslanders no matter where you receive them, as long as you have a Medicare card.
But there may be an additional cost if you need specialist equipment, medications, services or treatments. For example, if you choose to stay at home but need 24-hour care, you may have to pay for the cost of your own nursing staff, or you may have to cover the cost of complementary therapies such as massage.
There’ll also be extra costs if you receive palliative care in a private hospital, but Medicare and private health insurance may cover some of these costs. If you have health cover, it’s important to check what costs it will reimburse. Likewise, be sure to ask any accommodation or service provider what its costs are and how much you will be asked to contribute.
“It is important to find out as soon as possible who pays for what,” Hill emphasises. “Sometimes you may need to contribute to the costs of care.”
While most Australians would prefer to die at home, the reality is that such an outcome isn’t possible for everyone, for several reasons, as Hill explains. These reasons can range from your family’s ability to cope with your care to the nature of your illness or condition and how well your home is equipped for your care.
“Sometimes, the time and attention required by the patient may cause stress within the broader family,” Hill says. “The patient may become delirious or aggressive and agitated [and] managing someone who is restless is extremely challenging in a home environment.”
Keeping a person comfortable near the end of life often requires round-the-clock medical attention, drug changes and difficult clinical decisions that can only be achieved in a hospital or hospice setting, Hill adds.
“As the final hours approach, some families feel uncomfortable with the thought of someone dying where they live,” she notes, adding that family members who’ve cared for a loved one over a long illness can be emotionally and physically exhausted as the end nears, leaving them poorly equipped to provide support in the final days.
“If neither party’s needs are being met, then it may be time to move the person into another care setting,” Hill recommends. “The carers should feel that the spirit of the promise to ‘die at home’ has already been fulfilled.”
The Queensland Government explains that you may need to go to hospital while a particularly difficult symptom of your condition is managed or while additional home-based support is organised.
“It is sometimes possible for a community palliative care team to manage these temporary exacerbations at home, so that you avoid a hospital stay,” its website adds.
It’s important to note, however, that palliative care is a choice; you’re not obliged to accept such care, nor seek pain relief or other treatment. Queensland medical professionals and caregivers have a charter under which they promise to “respect your choices and your right to independence with compassion and integrity”.
Palliative care at home may also not be available to you because demand for such care outstrips the availability of services in your local area. In its 2017 report, the Productivity Commission called on the federal, states and territory governments to better coordinate the services each funded to ensure care was available to all Australians in the location of their choosing.
No matter where it’s delivered, palliative care typically requires a multidisciplinary team approach from medical, nursing and allied health professionals, volunteers and carers.
Palliative care at home can involve simple assistance with day-to-day activities such as bathing, cleaning or making meals, with the care designed to complement assistance you’re already receiving from family or friends.
For people with complex symptoms related to their condition, specialist palliative care can be provided by health professionals, possibly though appointments at an outpatient clinic. This specialist care does require a referral, however, which you can discuss with your GP.
You can find information about medical, nursing and other palliative care service providers and community support agencies by checking the National Palliative Care Service Directory. PalAssist provides a free, 24-hour telephone and online service in Queensland for palliative care patients, their carers, family and friends.
The Queensland Government also has plenty of information on palliative care and end-of-life care more broadly, including how to access such services.
IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.
Even though contemplating our own end of life can be a bit confronting, thinking about it ahead of time and carrying out advance care planning can be beneficial to you, your loved ones and your healthcare team. Depending on your personal preferences and stage of life, advance care planning might be as simple as having a conversation with your loved ones or healthcare team about what you would want if you were very sick or dying, or you might choose to complete written forms recording your decisions about medical treatment and care.
Read through the information on the Queensland Health website about the different steps involved in advance care planning including discussing, recording, sharing and reviewing.