Although SAVES (The Living Will Society) no longer exists, their advice in the article below remains valid.
When it comes down to life or death
Making a living will is one of the kindest things you could do for both yourself and your loved ones, because by speaking for you when you can't, it can save them from unnecessary stress and expense, and can save you from prolonged pain and suffering.
As we age and the inevitable approaches, we tend to confide in our children or those close to us important last-minute details, such as where to find the keys to the safe.
But informing family members of your wishes when it comes to life-and-death issues could prove equally or even more valuable. Issues such as what you would want them to do if you survived a severe stroke or accident, or contracted a terminal illness that left you clinging to a life-support machine.
In the final stretch of an illness from which you have no hope of recovery and which is causing you a great deal of pain, would you want your family to take every measure they could to try to keep you alive for a few more days, or another week or month?
Your family may find it useful to know the answers to these questions, not only for family members who are ageing, but also for younger family members, because life can take unexpected turns (see "The agony of seeing a loved one suffer" below).
There is an increasing need to know how family members want to be treated in these "death-in-life" situations because modern medicine and techniques have advanced enormously, enabling medical practitioners to sustain life that would otherwise not continue. But because it may be difficult to broach these subjects over Sunday lunch, it may be easier to encourage those closest to you to make a living will.
A living will enables you to state in advance what treatment you would or would not consent to, and it will also speak for you if you are seriously ill and incapable, physically or mentally, of giving or denying consent.
You don't need to list each and every procedure or medication to which you agree or don't agree. You simply need to state that, in a situation in which your doctor knows you are dying and in which life-supporting machinery or procedures won't help you recover, you don't want to be kept alive artificially.
Making such a will doesn't mean you don't want to prolong meaningful life for as long as modern medicine enables you to.
It does not mean you are instructing doctors not to treat you in cases in which you could recover from an illness and live on.
It also doesn't mean that you are instructing doctors and nurses to abandon you when you are dying.
If you are able to deny consent for further treatment or if you have a living will that contains such wishes, your doctor is still obliged to do all that he or she can to keep you comfortable and free of pain.
In a living will, you can even ask a doctor to prioritise your comfort in your final hours by administering pain-relieving medication, even if this hastens the moment of your death.
If you make a living will, your family and friends could be saved from difficult decisions about what to do at a time when they are already stressed and emotional as a result of your condition. They will have clarity that a certain course was what you would have wanted.
You can write your own living will, but if you need some guidance, the Living Will Society, a non-profit organisation formed in KwaZulu-Natal in 1974, can assist you to sign and lodge these documents to protect you against a prolonged death.
More than 50 000 people throughout South Africa have enrolled as members of the society and have signed living wills.
The director of the society, Brigid Raw, says the society believes that death should be as dignified and as humane as possible.
When a family member is suffering from a terminal illness or when there is no imminent or reasonable chance of recovery, it is pointless to sustain a person's life. Doing so serves only to prolong unnecessary distress to all concerned, the society says.
Raw says a living will could potentially save more than just the agony of relatives having to make a life-and-death decision on your behalf.
It could also save your family money because often people who are dying are taken to a hospital instead of a hospice.
In a hospital setting, medical practitioners will be expected to do something for you - you could be sent for expensive diagnostic tests or put on expensive treatments when possibly you are 93 years old and your prognosis is hopeless.
These tests and treatment may only cause you and your family more distress.
You can avoid such a situation by making a living will, Raw says. It could also prevent family members making emotional decisions about treatment.
Raw says the society has seen cases where children fly in from different parts of the world because an elderly parent is dying. Out of feelings of guilt for not spending more time with their parents, they ask doctors to do everything possible to save the parent's life. There may even be family disputes about what should or should not be done for the dying person.
The acronym for the Living Will Society under its old name was Saves. Each letter of Saves stands for something the society believes a living will can save you or your family:
- Suffering and pain;
- Anxiety for loved ones;
- Valueless prolongation of terminal illness;
- Existence without quality of life; and
- Spending life savings unnecessarily.
What do you say in a living will?
To make a valid living will, the following conditions apply:
- You must be at least 18 years old;
- You must be mentally able and not in any mental distress;
- You must be fully informed of the consequences of making such a will;
- You must understand that the will applies to all future situations and circumstances; and
- You must not be influenced or put under pressure to sign the will.
According to the Living Will Society, your living will should be addressed to your family, your doctor and any health authority. The society suggests it should be worded as follows:
"If the time comes when I can no longer take part in decisions for my own future, let this declaration stand as my directive. "If there is no reasonable prospect of my recovery from physical illness or impairment expected to cause me severe distress or to render me incapable of rational existence, I do not give my consent to be kept alive by artificial means, including any pacemaker, nor do I give my consent to any form of tube-feeding when I am dying; and I request that I receive whatever quantity of drugs and intravenous fluids as may be required to keep me free from pain or distress, even if the moment of death is hastened.
"Do not resuscitate: I do not give my consent to any person's attempt at resuscitation, should my heart and breathing stop and my prognosis is hopeless."
It is advisable to agree to be given fluids intravenously in these circumstances, Raw says, because dehydration can cause discomfort.
Raw says living wills can be very detailed - Canada, for example, has one that is 32 pages long - but the society has decided to keep its will brief and general.
The Living Will Society suggests you make three (or more if you need to) original living wills and sign each one in the presence of two witnesses.
Witnesses should be over 16 and they should not be family members or beneficiaries of your last will and testament, or your personal medical practitioner.
One original signed and witnessed copy of your living will should be kept at home for easy access by someone other than yourself, so that if you are unconscious, that document can be handed to those who are treating you.
A second original living will must be kept for use should you be admitted at any hospital, nursing home or hospice, where it can be kept on your in-patient file.
A third original document should be handed to your personal doctor.
If you are a resident of a retirement complex or old-age home, make a fourth copy of your living will and give it to either the management or the clinic sister, the Living Will Society suggests.
Members of the Living Will Society are provided with medical file stickers that can be used to alert doctors and others at such facilities that your file contains a living will.
Share your decision to make a living will with anyone who may have to implement your wishes, such as your family and friends, and tell them where to find it.
Don't include the wording of your living will in your last will and testament, or attach it to that document, the society says.
"Your last will and testament can only be acted on after your death, and you could be kept alive against your specific directives for months or even years, perhaps at great loss to your estate, before anyone is any the wiser," the society says.
When you make a living will, you cannot ask a medical practitioner to perform a mercy killing. Active euthanasia, which can also be called mercy killing or physician-assisted suicide, is illegal in South Africa, as is the case in many other countries.
The Living Will Society does not support active euthanasia, Raw says.
A living will endorses what is known as passive euthanasia - the withholding or withdrawal of unnecessary artificial life-support machinery, without which you would die naturally, she says.
The document is based on the premise that before anyone can treat you medically, he or she needs your informed consent. Giving such consent is your common law and constitutional right, and a medical practitioner who acts contrary to your expressed wishes would be acting unlawfully and rendering himself or herself liable to damages.
The National Health Act obliges a doctor who intends treating you to take all reasonable steps to get your informed consent before doing so.
In a living will, in advance of the possible need to do so, you give clear instructions about the type of treatment to which you would not consent should you be unable to communicate when you are dying. This advance directive is legally binding on your doctor and you.
The Living Will Society's website quotes Professor David McQuoid-Mason, of the Faculty of Law at the University of KwaZulu-Natal, who says: "It is the duty of medical personnel to obey a patient's wishes if he or she does not want life-sustaining treatment and has signed a living will (which must obviously be brought to the doctor's attention).
"If a doctor then does not obey the patient's wishes, he or she has, in fact, perpetrated an assault against the patient and can be sued."
McQuoid-Mason says South African law recognises your right as a patient to decide whether you want to live or die, to accept treatment or refuse it.
In an August 2005 article titled "Pacemakers and end-of-life decisions" in the South African Medical Journal, McQuoid-Mason says that although living wills have not been recognised by the South African courts or legislation, "they should be regarded as legally binding, provided that they were made when the patient was mentally competent, and doctors are satisfied they reflect the patient's current wishes".
McQuoid-Mason says the courts have held that in circumstances in which your condition is terminal and your prognosis is hopeless, the underlying cause will be regarded as that which causes your death and not the withdrawal of treatment. He believes the same is true of "turning down" a pacemaker to a level that no longer artificially sustains your heartbeat.
The wording of the Living Will Society's living will includes specific reference to a pacemaker as a possible cause of prolonging your life, and McQuoid-Mason advises anyone who has had a pacemaker implanted to make a living will.
McQuoid-Mason says the National Health Act defines death as "brain death" (when your brainstem is no longer functioning). However, a pacemaker could keep you alive when you are in what doctors describe as a persistent vegetative state with a functioning brain stem but with "a total loss of cerebral cortical functioning". Your cerebral cortex is the part of your brain that plays a fundamental role in memory, attention, perceptual awareness, thought, language and consciousness.
Legislation aimed at formalising the status of living wills was researched by the South African Law Reform Commission more than a decade ago, and in 1999 the End of Life Decisions Bill was drafted.
However, the Bill contained other controversial issues and was never brought before Parliament, resulting in the failure of the part of the Bill referring to living wills to make it into law.
The World Medical Association, to which the South African Medical Association (Sama) belongs, adopted the Declaration of Venice on Terminal Illness in 1983. In this declaration doctors are encouraged to recognise the right of patients to make advance directives, such as living wills, to describe their wishes in the event that they are unable to do so.
Sama's guidelines for medical practitioners on living wills says doctors who have "conscientious objections" to withholding treatment should advise you or your family of their views and offer to step aside and transfer your care to another practitioner who will abide by the instructions in your living will.
Raw says the Living Will Society will support the next-of-kin of its members if they encounter problems with medical practitioners refusing to abide by members' wishes as outlined in their signed living wills.
She says the society will ensure that an impartial doctor discusses any recommended treatment, your prognosis and your living will with your practitioner.
Raw says there has never been a South African case in which the wishes of a person who signed a living will were ignored and the person or his or her family had to go to court.
If you don't have a living will
The National Health Act obliges health-care providers to obtain your informed consent before going ahead with any treatment or procedure.
The exception, of course, is in cases when delaying such treatment or procedure would result in irreversible damage to your health or your death, or when there is a serious risk to public health.
Informed consent means you must be told your health status (except in circumstances where it would not be in your best interests), and you must be told about the range of procedures and treatments available, the benefits, risks and consequences of each option, and the implications, risks and obligations of refusing the health services.
If you do not have a living will, and are incapable of consenting to or refusing a treatment or procedure, the National Health Act sets out who may agree to (or refuse) treatment for you.
The Act says your doctor may obtain consent from someone you have mandated to give consent on your behalf or a person authorised to do so in terms of any law or court order.
In an article titled "Advance directives and the National Health Act", published in the South African Medical Journal in December 2006, McQuoid-Mason says that no formalities are required when you give such a mandate, other than that the mandate must be in writing.
"It would be prudent, however, to have the mandate dated and signed by the patient and two witnesses," McQuoid-Mason says.
If no one has been mandated or authorised to give consent on your behalf, the Act says your spouse or partner can give consent.
If you do not have a spouse or partner, then a parent, grandparent, adult child or a brother or a sister, in that order, may give consent.
In the case of Alzheimer's disease, the Living Will Society says that if you have signed a living will before being diagnosed with the disease, it should be legally valid.
But a person who already has Alzheimer's is likely to be regarded as mentally incapable of signing such a will. In such cases, and in the absence of someone appointed by a court or mandated by the patient, healthcare personnel will look to a spouse or partner, then a parent, grandparent, adult child, brother or sister to consent to treatment.
The Living Will Society says the "first guardian" of someone who is mentally incompetent - for example, the spouse of someone who has Alzheimer's disease - can sign a specially worded document on behalf of their spouse, so that if the competent spouse dies first, family members who take over the care of the Alzheimer patient will be aware of those wishes.
The society strongly suggests, however, that you get legal advice before drawing up such a document.
The Health Professions Council of South Africa (HPCSA) regulates health practitioners in the country. In a May 2007 booklet titled "Guidelines for withholding and withdrawing of treatment", the HPCSA urges doctors to encourage patients to make living wills and to abide by their patients' wishes.
It also says a healthcare professional may alleviate your suffering if you are terminally ill by withholding treatment and allowing the natural process of death to follow its course, provided there is consultation with another healthcare practitioner who is an expert in the field and, where available, there is discussion with your closest relatives.
At times, healthcare providers may need to make decisions on your access to scarce healthcare resources, such as those required for critical care or renal dialysis. These decisions may be contrary to your wishes or those of your family.
The HPCSA says any restriction on access must be based on national admission criteria agreed on by professional bodies in the relevant speciality, as well as by the HPCSA.
Update your living will
If your beliefs change, you can add to or amend a living will accordingly. In fact, you would be wise to read through any living will you make and reconsider or reconfirm it, by signing and re-dating it every few years, so that medical practitioners can be sure you haven't changed your mind since you made the will.
Join the society
You can join the Living Will Society for a one-off fee of R60 (or R110 for married couples or R20 for pensioners who receive a state grant).
If you enrol as a member, you will be sent three copies of a living will, instructions on how to sign and lodge the documents, a card to keep in your wallet that informs anyone who reads it that you have a living will and where that will can be found, as well as some medical file stickers.
Members are asked to support the society by paying an annual subscription of R30, unless you are receiving a state grant, in which case you pay R10 a year.
Members of the Living Will Society who wish to wear a Medic Alert disc engraved with the words "Living Will" (in addition to carrying a living will wallet card) may also join Medic Alert (www.medicalert.org).
The agony of seeing a loved one suffer
In 2006, while attending the annual convention of the Financial Planning Institute (FPI), Prem Govender, the institute's then newly elected chairperson, received the call all of us with elderly parents dread.
Her father had had a massive stroke and she was advised to pack her bags and return home to Verulam, north of Durban, because he was unlikely to make it through the night.
But Govender's father, CP Naidoo, proved the doctors wrong. Despite the fact that he didn't swallow, talk or move after the stroke, her father lived another 14 months before passing away in October 2007. "You can only imagine what that entails," Govender says. "You never factor in something like that."
Govender, who joined her accountant father in his business after university and is now a highly experienced financial planner, says her experience has taught her "how we can miss different aspects of financial planning" and how "even people like us can make errors".
Govender was fortunate that her father had made provision for the specialised care he ultimately came to need.
Initially, she says, the family took him home and hired nurses to care for him 24 hours a day. But the family soon realised that the nursing staff needed constant supervision.
The family then put her father in a nursing home at a cost of R7 500 a month. That cost excluded the food her father was fed through a peg in his stomach and other consumables, such as adult diapers and the swabs used to clean him. In addition, a physiotherapist visited him every second day to ensure that he didn't get fluid on his lungs.
Govender says her father needed a special bed and special mattress to prevent bed sores.
In total, she estimates her family spent between R12 000 and R15 000 a month on her father's care after his stroke.
Govender was fortunate that her father was on a top-of-the-range medical scheme option. He spent three-and-a-half weeks in hospital, for which the bill was just short of R80 000, and he was covered in full for that expense. The bills of the doctors who attended to him were also paid, and the costs of his ongoing medication were covered.
The scheme covered the out-of-hospital nursing care for Govender's father for 14 days only. All the costs of the nursing home, the consumables used during his lengthy stay and the physiotherapy were, however, for the family's account.
Govender says she was fortunate that before his stroke, her father had travelled overseas and at that stage she had obtained a general power of attorney and also a specific power of attorney giving her the ability to operate his bank account.
Had she not had these powers, Govender says she would have had to hire an advocate to apply to the High Court to have her appointed curator of her father's affairs to gain access to his funds.
But Govender says more than the expense of caring for her father was the emotional and physical toll on the family.
Not wanting her father to think he had been abandoned, Govender visited him every day after work, sitting with him until after dark.
Besides the strain of the daily visits and seeing her once active father so incapacitated, Govender says she had to deal with the guilt of knowing he didn't want to be in the situation he was in.
"He looked at me pleadingly. I taught him to blink once to say yes' and to close his eyes to say no'. But sometimes he closed his eyes when I talked to him. He was angry with me.
But I couldn't do anything to get him out of there. My hands were tied."
Govender says she now knows a living will could have saved her father from lying in his bed day in and day out without any quality of life. But that will would have had to state specifically that he did not want to be fed artificially or given medication that would keep him alive but not help him recover.
Govender says her dad was stabilised within a few hours of the stroke, and artificial feeding through a naso-gastric tube started immediately.
Doctors told Govender that this feeding had to continue for as long as he was alive.
Govender says her father was never on life support and so there was never a question of turning off a machine that kept him alive artificially.
As long as he was fed and given medication, he lived on - until he died from what the doctors believe was a blocked blood vessel.
Doctors felt morally obliged not to deny her father food or medication, she adds.
That is why she now knows how important it is for your living will to deal with more than just life support. You need to give specific written instructions to the effect that you do not want to be resuscitated or to be fed, she says.
"I now have a written will that says that if I suffer a debilitating stroke like my dad, I won't be kept alive artificially."
Govender says her advice to ensure that you can deal with whatever happens to an elderly family member is that you:
- Buy medical scheme cover as wide and as comprehensive as you can afford;
- Draw up a living will that deals not only with being kept alive on life support, but also with specific issues such as being resuscitated after a massive stroke and then being kept alive through the constant administration of food and medication;
- Obtain general power of attorney, especially if the family member was economically active;
- Obtain special power of attorney to operate the family member's bank account; and
- Make sure you know where your family members keep the necessary documents.
A document that is not just for the elderly
Everyone, not only those who are of an advanced age, should consider a living will, because no one knows when they may face a life-and-death situation.
South Africa has a very high rate of motor vehicle accidents, and an accident could leave you, as a younger person, in a situation where life-support equipment or techniques prevent you from dying naturally.
Similarly, people who practise certain sports, such as cycling or boxing, are prone to injuries that may leave them on life support.
Raw says younger people's bodies will keep going much longer on life-support machines or as a result of life-sustaining techniques such as tube feeding.
You may be incapable of participating in daily life in any way, but the impact on your family's lives could be huge.