You hear about it on the news, you probably know someone who’s had to face it, or you might be facing it yourself. The decision of when to withdraw life support or whether to begin it at all is a sticky one, muddled with confusing terms and strong emotions. A notable case in the media was that of Terry Schiavo in 2005. Her case dealt with whether her husband could decide to discontinue her artificial nutrition. It sparked a national debate. Although her case was very prominent in the news, it’s not the only case like it in the U.S. People are faced with the decision to withhold or withdraw life support every day.
Life sustaining treatment, also known as life support, is any treatment intended to prolong life without curing or reversing the underlying medical condition. This can include mechanical ventilation, artificial nutrition or hydration, kidney dialysis, chemotherapy and antibiotics.
Quality vs Quantity of Life
Advances in medicine and technology are helping people live longer. Life expectancy has increased from 68.2 years in 1950 to 77.8 years in 2004. These advances in medical technology are not only helping people live longer, but they help prolong the lives of people who couldn’t sustain life on their own. This raises the debate over quality vs. quantity of life. Ethical questions include:
- Are we helping people live longer at the expense of their comfort and dignity?
- If we don’t use artificial means to support life, are we denying them the chance to live longer or recover fully?
- What if a miracle happens while they are on life support and they are cured?
- What if we take them off life support and they find a cure shortly after they die?
Who Can Make Life Support Decisions?
The American Medical Association’s Code of Medical Ethics states that "a competent, adult patient, may, in advance, formulate and provide a valid consent to the withholding and withdrawing of life-support systems in the event that injury or illness renders that individual incompetent to make such a decision." This decision is usually made in the form of an Advanced Healthcare Directive or a Living Will. In the same document, a patient may designate a surrogate to make the decision for them if they are unable. If an advanced directive isn’t made and a surrogate isn’t designated, the choice whether to withhold or withdraw life support falls to the next of kin, according to state law.
How to Make the Decision
If you find yourself or someone you love faced with this decision, the most important thing you can do is evaluate your own goals and the known wishes, if any, of the patient. Gather all the information you can about the types of life sustaining measures the patient requires, including the benefits and risks of each one. Review the patient’s Advanced Healthcare Directive, Living Will, or Preferred Intensity of Care form if they are in a nursing home. If you are the designated healthcare surrogate, you hopefully have had a conversation about the patient’s wishes.
If there is no legal document to refer to and you have not had conversations about life sustaining treatments with the patient, the decision can be more difficult to make. I usually recommend to gather all close relatives and perhaps very close friends to discuss what the patient would have wanted. Each person will have their own unique experiences with the patient to draw on and the picture gained collectively will always be more complete that individually. It is best when all the patient's loved ones can agree on whether to withhold or withdraw life support. If a unanimous decision can’t be made, it may be helpful to try mediation. A social worker or chaplain can often help mediate difficult situations like these. The decision will ultimately fall to the designated or default surrogate but if all the patient’s loved ones can participate in the decision making process, it can help foster closer relationships and prevent resentment (and lawsuits).
After the Decision Is Made…
The choice whether to withhold or withdraw life support is a difficult one to make. I’d recommend getting some emotional support during and especially after making the decision. Making an informed decision, taking into consideration the benefits, risks, and what you feel the patient would have wanted for him/herself, can still cause feelings of guilt and uncertainty. Talk with a professional counselor, a member of clergy, or even a good friend to get those feelings out in the open and begin to deal with them. Check with your local hospice agency to find support groups of people who have gone or are going through the same thing. And lastly, give yourself a break. You are merely human and not divinely all-knowing. You can only make the decision you feel is best at the time.