Medical Decision Making

Choosing a health care proxy (aka a surrogate decision maker) and creating an advance directive (aka a living will) are essential parts of advanced care planning, because designating the person who can make medical decisions for you if you are not able (temporarily or permanently) helps to ensure that your wishes will be carried out. As I mentioned in Part 4 of this series, this choice can be more complex than it initially appears. We may assume that those close to us "know" our wishes, but the case of Terry Schiavo offers a painful example of how that assumption may be incorrect.

Terry Schiavo (1963-2005) lapsed into a persistent vegetative state because of an unexpected cardiac event in 1990. After two years of intensive therapy, the doctors determined that no further improvement was possible. Still, Terry remained on a feeding tube – perhaps because no one in her family wanted to give up hope – until 1998, when her husband Michael petitioned the Florida courts to have the tube removed.  This request was based on conversations he maintained they had had about her not wanting to life-sustaining treatments, should they ever be needed. But Terry's parents objected, saying that Terri's religious beliefs would have precluded her from refusing interventions. The case went back and forth in the Florida and national courts – even Congress and the President got involved – before finally reaching the Supreme Court, which declined to reverse the order to remove the tube. In 2005, after being on life support for 15 years, Terri’s feeding tube was removed, and she died less than two weeks later. This case highlights the importance of medical advance care planning and the potential consequences of not having a clear plan in place.

Terri’s husband and her parents were the closest people to her. In most state's hierarchical decision-making structures, it would have been Michael (as her husband) making the final decision for Terry, but the hospital's ethics committee would likely have at least considered her parent's wishes before life support was removed. 15 years of fighting and intense emotional pain destroyed what had been an amicable relationship between Michael and Terri’s family and subjected Terri to years and years of treatment she may not have wanted. Can you see why it is essential to specify your wishes (in writing) and name your proxy?

Terry Schiavo was only 26, and advance planning was probably not at the forefront of her mind. She was a young, married woman looking forward to a full life ahead. What is important to note here is that if she truly had strong feelings about not continuing treatment (as Michael maintained), and had written them down, it would not have made her death any less painful, but it would have saved years and years of emotional turmoil for all involved. Just a few hours now and half an hour each year to review and update your wishes can potentially shield your loved ones from a lot of agony.

While it's not a pleasant task, considering who should make medical decisions for you and what interventions you would want can bring a sense of peace and control. Having a clear plan in place, and discussing it with all involved, can bring a sense of relief, knowing that your choices are known and will be respected. Consider your wishes before you decide on a proxy, because that decision will depend on who will be able to carry out your wishes, even if it causes them great pain. 

Permanent life support interventions include a feeding tube (like Terri’s) or a ventilator. Dialysis is not really considered permanent life support as a transplant may be possible later, but many also live on dialysis until they die (it's important to note that while dialysis is very time-consuming – up to three full days a week – many, many people live fulfilling lives while on dialysis). Being on a ventilator or feeding tube may mean being wheelchair or bedbound, although it does not necessarily mean being unconscious or unable to communicate. Withdrawing life support that would be permanent rather than temporary means "allowing natural death," as without these interventions, you would not be able to live.

If you are a religious person who believes in the will of God, you will want to consult with your clergy about your church's position on life support. Sometimes these supportive measures are used to prolong life long enough for the body to recover and be able to function without them and can be withdrawn without loss of life, so rather than refuse certain treatments completely, the context will be key. Note that we are considering interventions that, without permanent use of which, you would die, not interventions that would simply reduce your mobility or render you temporarily dependent on them.

When considering interventions you might opt for if unable to make the decision yourself, it's important to become clear on what matters most to you in life. Starting at the worst-case scenario, would you want to live on life support in a vegetative state with minimal consciousness? How about being aware and awake but unable to communicate? Would you be willing to live if bedbound and unable to eat?

Advance directives are documents that will express your wishes for your care to help your proxy. To create one, you can start by thinking about what matters most to you in life and what kind of medical care you would want in various situations. Then, you can fill out your state's medical proxy form, especially if you are naming someone who is not your next of kin. Advance directives/living wills are not legal documents, but you must have them witnessed. They are guides for your decision-maker (s) to help the medical staff carry out your wishes. There are many, many good values-based advance directives that are available for free or a small fee, and usually, these will include a worksheet to help you identify what is most important to you so you can make the right choices. Below, we have attached a worksheet and a comprehensive free guide from the Mayo Clinic to help you do this.

Because our values change over our lifetimes, planning to review these documents each year is a good idea. This annual review ensures that your advance directives accurately reflect your current wishes and values, and it's a proactive step in taking control of your future healthcare decisions.

Once you've determined what interventions you would accept or refuse, you should turn to deciding who can make these decisions on your behalf. It’s essential to consider whether being this kind of decision-maker would burden those you might choose. Many people name someone a bit further removed – like a cousin, sibling, or friend – if they feel those closest to them could not make the decision to remove care or would feel too guilty to do so. Look at Terri’s case – who would have been closer to her than her husband and parents? Yet they had very different views about what Terry would have chosen, likely because of their different relationships with her. Whoever you choose, it is important to have a conversation with them to make sure they are comfortable taking on this role and are clear about what you would want or don’t want. If you are considering someone who is not your closest next of kin, please have a conversation with those you have not chosen to explain your reasoning, even if this feels difficult.

As I said, many advance directive forms allow you to name your proxy as well as your wishes, but many attorneys will include your state's medical proxy form in an estate planning package. In this case, you can craft a separate advance directive as a supplement to inform your proxy. My own attorney advised me to have two separate documents – my state's form and my advance directive. Your decision may depend on your own attorney's advice or other factors, like cost. Again, both medical proxy forms and advance directives do not have to be legal documents created by an attorney; most do not have to be notarized, just witnessed. The person(s) you name cannot serve as your witnesses for either of these forms.

Store the originals of your proxy and advance directives with the rest of your end-of-life documents – whether in your attorney's office, in a binder in your home, etc. No matter where you store them, make sure everyone close to you knows where they are. Please give copies of these forms to your primary care doctor as well, or, if you are in treatment for a serious illness, to your care team (note that if you have a life-limiting illness, there are different forms you will likely fill out, called MOLST or POLST forms, that are physician to physician-directed instructions for your care. If this situation applies to you, please discuss this with your care team). Most importantly, have that conversation with and give copies to your medical proxy. These are tough decisions to make on someone else's behalf, and you want your proxy to feel as comfortable as possible doing so.

Once you’ve completed these two forms – which can take some time, as you consider various scenarios – and communicated and distributed your wishes and stored them appropriately, you can breathe a sigh of relief and exhale. You have done some important work and should congratulate yourself. Considering our mortality and worst-case scenarios is never easy, and having hard conversations is never something we want to do, but completing this process has saved your loved ones a lot of pain. Even when making difficult choices for another, knowing we are in alignment with their wishes makes things easier for them and eliminates a lot of guilt and worry. 

In the next post, we'll turn to completing relationships and addressing anything left unsaid between ourselves or another. Again, please give yourself credit for engaging in this process; it is not easy, and many shy away from it. You will have truly given your loved ones a gift.