Most of us know that we need to have a Will and let our partner and/or children or close kin/friends now whether we want to be buried or cremated, and what type of accompanying service, if any, we would like.
Few perhaps know that some investigation beforehand may show that not all Funeral Directors are created equal in the matter of costs charged or alternative options provided. So often, the cost of funerals can be very expensive. Making the effort to peruse websites or make phone calls using the Yellow Pages well before there is a need can pay off handsomely: caskets can be really cheap and there are alternatives to embalming and other services too.
The ideal is that we remain in control of both our physical and mental faculties as we get older and that death comes swiftly and painlessly, preferably at home surrounded by family and/or close kin or friends. Unfortunately, it seldom is quite like that.
Should we become physically disabled, but remain mentally alert, we may like a voice in the type of care we need, especially if home-care becomes difficult.
All of us should have a copy of the “Code of Health and Disability Services Consumers' Rights” or the shorter “Your Rights When Receiving a Health or Disability Service”, both available from the office of the Health and Disability Commissioner.
These set out clearly our rights as a patient vis-a-vis the health system, and also the duties of providers of health services.
Some key headings
The right to:
freedom from discrimination, coercion, harassment and exploitation;
dignity and independence;
services of an appropriate standard;
make an informed choice and give informed consent;
But what happens if we should become mentally and/or physically unable to make decisions for ourselves any longer. The Code provides for an Advance Directive (AD):
(a) "by which a consumer makes a choice about a possible future health care procedure;
(b) that is intended to be effective only when he or she is not competent."
Whilst an AD can be oral, it is advisable to have a written one, co-signed by those who can attest to our mental 'competence' at that time, and list people who are prepared to speak up for us if that should be necessary.
ADs tend to specify in particular under what physical or mental conditions we may want to limit certain medical interventions.
We do not have the unlimited right to demand specific types of treatment, but the Bill of Rights gives us the fundamental right as competent consumers to refuse all forms of medical treatment even if such refusal should adversely affect our health or shorten our life.
Websites of the NZ Medical Association, the Health and Disability Commissioner, VESNZ, and others give advice and provide examples.
It is important to think carefully about the wording of our AD and discuss it with our GP or other trusted health professional, close kin and/or friends.
Check these websites if at all possible. On this Website there is a document advertised called ‘Guide to Dying – Your Way’, which if purchased, gives a complete outline of the issues and also a draft AD to fill out.
ADs have had little challenge as yet in New Zealand Courts. There are some difficult issues, around interpretation; challenges to validity; the obligation or otherwise of doctors and other care professionals to provide palliative treatment in the case of refusal of all other treatment; and whether food and especially fluids count as medical treatment.
The problems faced by Margaret Page (see Our stories on this website) to be allowed to end her life by stopping eating and drinking, suggest the importance of all adults having a clear AD irrespective of age. Margaret became increasingly disabled at age 40 as the result of a brain haemorrhage, needing to be fed and showered and with severely limited speech. The last 4 years she was in care in the St. John of God Care Home in Wellington, and ended her life by refusing all food and fluid.
It can be helpful to family and health carers to have a statement of our beliefs about life and death as an introductory paragraph. It is also helpful if we regularly update our AD, if only by dating and signing again. Though not always easy, it is helpful to talk about it with close kin and/or friends and with our doctor or other caregivers.
Personal Care and Welfare: it is also advisable to consider having an Enduring Power of Attorney in Relation to Personal Care and Welfare (EPACW).This is a legal document with a different purpose from an AD. It derives from a different Act of Parliament. The Government Office for Senior Citizens has a full 8-page copy plus explanatory notes.
"The effect of the enduring power of attorney is to authorise the person you have named as your attorney to act on your behalf in relation to your personal care and welfare if you become mentally incapable."
The latter is clearly defined in the Act. "You can authorise your attorney to act on your behalf in relation to all of your personal care and welfare matters, or only some of your personal care and welfare matters." They cannot act in matters of life and death, and this is why it is important to have an Advance Directive as well, which may authorise restriction of use of life support treatments such as respirators or resuscitation. We can also place conditions or restrictions on our attorney's authority, e.g. to consult with a particular other person or expert.
We can only have one Attorney now, but there is provision for a "successor attorney" who would take over in case our attorney is not able to act for us when the time comes. If provided for in the same document, this may save having to redo the document in the case of our attorney withdrawing for whatever reason.
Whilst an Advance Directive does not have to be made up by a lawyer, our EPACW has to involve a lawyer to explain implications to us and witness our signature. Our attorney and successor attorney have to sign and be witnessed separately from our signing this document, but this can be done by a JP. The (Successor) Attorney needs to be able and willing to act on our behalf if and when this becomes necessary. It helps if s/he knows us well, agrees with what we request in both our AD and EPA, is competent and preferably a good communicator.
Our AD needs to be attached to our EPACW with copies of both to our doctor, lawyer, close kin and/or other possible caregivers, as well as go with us if we have to go into hospital or hospice or other care institution.
Property: this is a separate EPA in Relation to Property and derives from the same Act of Parliament as the EPA in Relation to Personal Care and Welfare. This EPAP authorises the attorney (there can be two), to act in relation to all or a specified part of our affairs relating to property.The person must, of course, be willing, but also be trustworthy and able in respect to financial and management matters. Full information and a form for this EPA are available online.