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Living wills: a must have

This article first appeared in Personal Finance: 1st Quarter 2019

“The issues surrounding your right to a dignified death are relevant to Janet Hugo, whose husband was diagnosed with a rare blood cancer. Although he has recovered, the couple still had to make some changes to his estate plan, including his living will.

There’s been a powerful global movement towards recognising people’s right to decide about their preferred medical treatment at the end of their lives including decisions relating to pain management that potentially shortens life, refusing life-sustaining treatment, and assisted dying.

Our right to life is entrenched in our Constitution and we need to question what this right means at the end of our lives from a practical perspective. Our right to life is closely tied to our right to dignity, entitling us to a dignified death. We don’t have an obligation to live irrespective of our circumstances, including unbearable suffering at the end of life. I believe that we have a right to die, which requires, among others, clarity and certainty about the legal status of living wills.

Despite the current uncertainty, the National Health Act 61 of 2003 affirms our right to refuse any treatment whatsoever, even if it would thereby shorten our lives. Treatment against our will constitutes assault. Moreover, this Act specifies which of our relatives can make healthcare decisions on our behalf should we be unable to do so.

Professor Willem Landman, from the Department of Philosophy at the University of Stellenbosch, who has been assisting the initiative to table a private member’s National Health Amendment Bill in Parliament to clarify the legal status of living wills, says: “The ethical and legal principles underlying the Draft Amendment Bill are already enshrined in the National Health Act and in our law more generally. Those principles just need to be made explicit in respect of a living will, by clarifying its legal status, addressing its practical requirements, and protecting medical professionals against prosecution should they follow its directives.”

What is a living will? 

A living will is a very specific document regarding your health care at the end of your life. It states that any treatment that would otherwise lengthen your life should be withheld, in very specific circumstances, including being in a permanent vegetative state, irreversibly unconscious, or terminally ill and suffering.

In essence, through a living will you express the desire to die a natural death, free from having your life extended artificially using life support in any form, such as medication, tube feeding, dialysis, or a life-support machine. A living will would never withhold any necessary and adequate pain management, even if it shortens life.

A living will can also specify whether you would like to donate organs or tissue to assist others to live or to use for research.

Although the legal status of living wills is still uncertain in South Africa, they certainly do have evidentiary value regarding your treatment preferences that doctors should take into account.

I therefore prepare living wills similarly to any other fiduciary document, such as a last will and testament or a power of attorney. My clients sign the document when I know that they are in sound mind and it’s a free expression of their preferences. It’s witnessed by two people who are not family members or their doctor.  I regard the preparation of living wills as an essential part of an estate planning process. Our bodies are, after all, our most valuable asset.

It’s important not to include your living will as part of your last will and testament, which is only of use once you have passed away.

The benefits of living wills

Living wills provide peace of mind as they give us the opportunity to express our choice of medical care should we be terminally ill and unable to communicate. They also assist in settling arguments among family members and medical professionals regarding appropriate treatment. Sometimes a child, who is the primary caregiver of a terminally ill parent, may be comfortable with refusing treatment, while a sibling not living near the parent would want everything done to prolong the patient’s life.

Conflict within families is confirmed by Dr David Bass, the medical adviser to the Western Cape Hospitals: “Dispute usually originates from offspring who were either not consulted about the living will or have a personal motive to keep the terminally ill person alive. Therefore, it is vitally important for anyone making a living will to inform their close family about the nature and content of the will while they are still of sound mind.”

Another hard truth and benefit of living wills are that they assist in containing the cost of dying.  Most people would prefer to pass away rather than live for years on life-support, which can lead to astronomical medical bills that can jeopardise their family’s financial security. It’s very tough for a family member to request the withdrawal of medical treatment based on affordability.

I asked Dr Bass how the Western Cape Hospitals managed the cost of terminally ill persons. He said: ‘’Our approach is to continue to care for the critically ill person, guided by the response to treatment, and the prognosis for survival with a reasonable quality of life. If we think that survival entails an undignified or miserable quality of existence, we de-escalate management to the essentials, such as pain relief and hydration. If there is pressure on critical-care beds, we may transfer the patient to a general ward. If family members want to take the patient home, we will consider that option as well. However, we will not relinquish care or force a patient out of a hospital even if there is very little we can do for them. In that respect, we are not much different from the private health sector.”

It isn’t always as kindly in other provinces where there may be a lack of resources. There was the court case Soobramoney v Minister of Health 1998 in KwaZulu Natal. The patient was suffering from renal failure and after he ran out of funds he turned to a public hospital for renal dialysis since he failed to meet the medical criteria for a kidney transplant. He claimed entitlement to the emergency treatment given his Constitutional right to life.

The Constitutional Court held that the right to life did not impose an affirmative obligation on the state to provide lifesaving treatment to a critically ill patient where there is a scarcity of the requisite resources.

How about a power of attorney?  

We’re all human and by nature don’t like to consider the circumstances that may surround our passing, and some people mistakenly regard a general power of attorney as a substitute. A power of attorney is only of use when you are in sound mind and can communicate and authorise a person to act on your behalf. For instance, if you’re in a hospital and unable to manage the sale of your home, you can instruct the person to whom you’ve granted authority, to proceed on your behalf. A general power of attorney is thus not a substitute to a living will, which only applies when you are unable to make your own medical decisions.

The complexities 

Living wills present a range of complexities, but they are certainly not insurmountable.

Practical issues regarding living wills should be actively managed by putting in place various measures. They need to be made accessible to doctors when a critically ill person is admitted to hospital. Doctors are trained to save lives and may automatically treat someone and then face the very difficult decision to withdraw the intervention.

Doctors’ responses may vary when terminally ill patients are admitted to hospital. Some fear litigation and revive patients regardless of an existing living will and their family’s consent to withdraw treatment. The National Health Amendment Bill anticipates putting a stop to this.

The motivation to preserve life at all costs can also be due to the Hippocratic Oath tradition which doctors take at medical school. The oath dates back more than 2 500 years and requires doctors to swear by the healing gods that they will uphold specific medical standards. Our challenge is to understand those standards in an era of extraordinary medical technology which may extend life beyond what was ever contemplated in the oath. We need to rethink what the fundamental values underlying the oath mean for end-of-life decisions.

Some doctors believe that only God should determine the time and manner of our death, which means that they should always attempt to prolong life. This fails to take account of other accepted ways in which we “interfere” with the length of life for instance using antibiotics and surgery. So, it would be inconsistent to argue that God would approve of our fighting disease using medical technology but disapprove of allowing a natural death by means of a living will.

On his 85th birthday Archbishop Desmond Tutu said: “With my life closer to its end than its beginning, I wish to help give people dignity in dying. Just as I have argued firmly for compassion and fairness in life, I believe that terminally ill people should be treated with the same compassion and fairness when it comes to their deaths. Dying people should have the right to choose how and when they leave Mother Earth. I believe that, alongside the wonderful palliative care that exists, their choices should include a dignified assisted death.”

Another complexity relates to the symbolic value of food and water. You may refuse medical treatment but wish to receive artificial nutrition and hydration. A living will could take care of this preference. Still, these are indeed forms of medical treatment and they would certainly lengthen the process of a natural death.

There are also different views on the management of pain and on how much morphine to administer to ensure the relief of pain. Prof Landman says that there is evidence that doctors globally under-medicate for pain in fear of legal consequences. He argues that all measures necessary for the adequate treatment of pain should be pursued and if such pain alleviation also inevitably happens to hasten death, that would be acceptable medical practice.

At the end of the day

Life is finite and dignity always our Constitutional right. I firmly believe that everyone needs a living will as the complexities can be managed, and all the underlying principles are already embedded in our law and the National Health Act. One needs to prepare the document when you’re well and likely to make rational decisions. Also, follow Dr Bass’s advice and discuss the document with all members of your family and fiduciary specialist, and make it widely available to all who might manage your medical care.

Janet Hugo, a Certified Financial Planner and member of the Financial Planning Institute, is director of Sterling Private Wealth and Financial Planner of the Year 2018″

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