Dying well at home - End of life decisions in home care
27 Jan 2015
A recent report commissioned by the Australian Government1 found that while 70% of Australians want to die at home, only 14% do so.
The report concluded that while the vast majority of people prefer to die at home most people die in hospital or aged care facilities because they haven’t had an opportunity to express their wish to die at home, and even if they had, there are limited at home care services available.
While community based palliative care programs has expanded in Australia there are still relatively few people who can access them. Undoubtedly, far more people would take advantage of at home palliative care services if they were available.
End of life care in a home care context – the law
There is no one set of consistent laws that apply across Australian in relation to end of life decision making. When thinking about end of life decision making in the context of home care the first thing you need to do is obtain clear advice about what the laws are in your particular state.
Whilst there is no one set laws that apply across the country (and the terminology differs from state to state) the concepts that apply across the country are not inconsistent.
Advance care planning versus advance care directives
An Advance Care Plan appoints a substitute decision maker and documents preferences to provide clarity for health professionals who provide treatment and services. It is a wish list i.e. how would I like my care to be managed in the event I lose capacity, but it is not a legally binding decision about that health care.
An advance health directive is a legal document that enables a person to give instructions about their health care which can then be used if a person is unable to speak for themselves. The document may also appoint a substitute decision maker and can include non-medical wishes for end of life such as spiritual care.
An advance health directive allows a person to make specific directions about the care a person would want and under what circumstances. An advance health directive only comes into effect when a person loses capacity meaning that it can only be made by the person when they still have capacity to communicate their decisions.
Substitute decision makers
Substitute decision-maker (SDM) is a general term for a person that is either appointed or identified to make health care decisions on behalf of a person whose decision-making capability is impaired. A SDM may be either:
- chosen by the person informally;
- formally appointed by the person under the legislation that applies in the State or Territory where they live; or
- assigned to the person or appointed for the person by a court.
There are some differences between Australian States, but generally substitute decision makers can consent to medical treatment on behalf of a person if they are unable to do so themselves. In some States, they can also legally refuse medical treatment if those wishes have been recorded in an advance care directive.
Best interests and end of life care
As a general rule, any substitute decision maker acting or making a decision on behalf of a person with impaired capacity must make decisions, including decisions about end of life care, in a person’s ‘best interests’.
The requirement to consider whether or not an action is in a person’s best interests involves a consideration of the person’s views and wishes and this is really at the heart of substitute decision making and advance care planning.
It is well accepted in law that the provision of futile treatment, which has no curative effect, is not likely to be considered in the best interests of the adult and a decision to withdraw that treatment, which may have the effect of causing death, can be a decision, which is consistent with the best interests of that individual.
Voluntary euthanasia and assisted suicide
Sometimes public perception clouds a person’s wish to die at home as being suspicious of assisted suicide or euthanasia.
Assisted suicide means providing someone with the means to end their own life whereas euthanasia means ending another person’s life at his or her request. Both are crimes that involve an element of intent meaning there is an active decision made to assist a person to die.
Whilst it is illegal for a medical practitioner or any other person to provide treatment with the intention of accelerating death, it is not illegal for a medical practitioner to make a decision to withhold treatment which might lead to an earlier death or to provide treatment, such a pain medication, which is provided purely with the intention of relieving pain, although it may have the incidental effect of accelerating death.
In the case of a decision made to withdraw treatment on behalf of a person with impaired capacity, there are different laws in every State. However, the basic concept is that it is acceptable for an authorised substitute decision maker to make a decision to withdraw treatment which is futile, has no curative effect and it could not be said to be in the best interests of the adult to continue to provide it.
End of life care at home and consumer directed care (CDC)
If palliative care is being delivered on a home care basis the client (and their family) should have a clear understanding of the entire end of life care support services they might access as a part of their package and, especially in a CDC context, have direct involvement in decisions about how they want to spend their package.
The number one theme of CDC is that the care the person receives is determined by the person’s choice. If a person can receive appropriate palliative care services at home this may mean the difference between a peaceful quiet death at home rather than an unwanted admission to hospital. A home care package could fund a range of end of life care services including:
- specialised nursing care;
- social support ;
- respite; and
- support and bereavement counselling.
A good system for end of life decision making in home care
The best approach for effective end of life decision making in home care (whether in a CDC setting or otherwise) should involve adopting a system that includes a number of components as detailed below.
A comprehensive policy and procedure
Providers should implement a clear policy that can be provided to clients and their families about advance care planning that establishes it as a routine component of end of life care.
Information for clients and families
Providers should provide clients and their families information about advance care planning and advance care directives (and what the process will be to help them through the decision making process upon entry to a service). For clients accessing a high level home care package this should be a normal part of the initial assessment and planning process. Individuals need to understand the role of the substitute decision maker and consider who they wish to appoint in this role.
Education and information – for staff
Providers should educate their staff about the laws dealing with end of life decision making in their State. This education should ensure staff are aware of the requirements to make a valid decision about end of life care in circumstances where the client has capacity and when decisions need to be made by substitute decision makers.
It is important to make sure your staff also understand the difference between an advance care plan and advance health directive i.e. if there is an advance care plan but no directive who will make decisions for the client in the event they lose capacity?
Staff should also understand that the basic premise that a substitute decision maker must always make decisions which are in the best interests of the adult and in turn understand that if they become concerned that a substitute decision maker is making decisions in a way that is not consistent with the interests of the adult that there is a process for staff to follow to report the inappropriate behaviour and that appropriate action will is taken in response.
Providers should adopt a clear plan in consultation with the family and the client’s GP that includes palliative care options tailored to each person’s needs and circumstances. It is important to make sure that any discussions with the patient and their family focuses on realistic options and the difference between active treatment and palliative care.
The client and their plan needs to contemplate who will make decisions in the event that the client loses capacity. This is of course on the presumption that you have provided training to your staff and have included in your policy information about who can be appointed as a substitute decision maker and their powers.
In the end of life care context, the planning process should consider questions such as:
- When do you want to be transferred to hospital?
- When do you want to receive antibiotics? i.e. chronic conditions versus acute illness
- When, if at all, do you want to be actively resuscitated?
- Are there any treatments you definitely do not want?
Timing and implementation
The final thing that may seem a little obvious but probably still needs to be said is that adopting a plan is of course only the first step; it is vitally important then to ensure that the plan is implemented effectively.
There is no point having an advance care plan or directive if there is little chance it will be followed. It is critical to ensure that once the plan is adopted, a provider has processes in place to ensure the plan is implemented in accordance with the client’s wishes.
It is also important to ensure you embed in your processes a mechanism to re–visit and review the end of life care decision making process. This review process could include care planning and advance care directives at regular intervals to ensure that the client still wishes their care to be managed in the same way. This becomes more important as health starts to decline.
There is no doubt there will be an increase in supply and demand for end of life care services at home in coming years.
To ensure palliative care is delivered at home in a way that meets the client’s needs but mitigates a provider’s compliance risk you should make sure you have an appropriate process in place which is consistent with the laws in the states in which you operate and that your staff, clients and their families know about the process and how it will work.
If you need advice about the laws in your state and appropriate policies and procedures to deliver end of life care at home, Hynes Legal can help.
Julie McStay, Director
07 3193 0503
1Swerissen, H and Duckett, S., Dying Well. Grattan Institute, September 2014.