Antonio Guill, Lonely Woman Watching Sunset Alone in the Winter
Source: Antonio Guill, Lonely Woman Watching Sunset Alone in the Winter

As an ICU doctor, I often care for patients who can no longer speak for themselves. Whether their illness came on gradually or occurred without warning, they lie in bed without a voice. Their family, if they have one, must take on the role of surrogate decision-makers. This is a tremendous responsibility and can cause upheaval and rifts in even the most functional of families.

Here are some common patterns I have witnessed that compromise the patient’s well-being.

  • “The sister from the coast”  This situation is usually precipitated by a person who does not live close to the patient and may not even be very involved in her life.  Propelled by guilt or anxiety or simply out of touch, this person flies in to “save the day” or, in other words, to keep the patient alive at all costs. This often puts the local family in an uncomfortable situation.  For months or even years, they may have engaged in conversation with the patient, cared for the patient, communicated with the healthcare team; ultimately coming to a carefully considered decision which may involve withholding or withdrawing life-prolonging treatments.  Their efforts are suddenly thrown off course by the latecomer.  And even the most committed person might feel as if he is just “pulling the plug”, giving up, not caring enough, when confronted by someone pushing for continued treatment. When death is approaching, it is a time for careful reflection, not for a unidimensional push to prolong life regardless of all other considerations. The “sister from the coast,” while well-intentioned, will ultimately go back to the coast. Decisions must come from a deep rooted understanding and consideration of the patient’s preferences, not just an urgency to prolong life at all costs.  
  • “I don’t want to be responsible for grandma’s death.” When a person on life support is not expected to get better—either to ever wake up or to return to a lifestyle that would be acceptable to her—families respond in a variety of ways. One response I have observed is families acknowledging that their loved one would not want to live a life on machines, yet not feeling comfortable requesting that life support be discontinued. They are overwhelmed by the idea that their decision could result in their loved one’s death, and can’t imagine living with that feeling for the rest of their lives. I understand this sentiment completely, but  I always ask these families to consider the alternative. Are they truly ready  to commit their loved one to a life they did not want? A life that would most certainly involve pain, suffering, and loneliness.
  • Old family narratives, like sibling rivalry or trauma. The crisis of dying can re-ignite dynamics that may have lain dormant for decades. A traumatized child who suffered at the hands of an abusive parent can lose perspective on what needs to get done. An estranged child, especially if feeling guilty about having left the family, may be unable to let the parent go, stuck in a last attempt to demonstrate his love.  Siblings may fall back on childhood behavior—competing to express their dedication to their parents—pursuing maximal life support at all cost and forgetting to consider their parent’s unique set of preferences and values.
  • Co-dependence and fear of loneliness.  A child or spouse might simply not be willing to let go, hoping that the doctors can bring the person back to life.    
  • Money.  Unfortunately, as in most other aspects of our society, money plays a part in dying too. Sometimes family members are making decisions based on financial considerations, even greed.  When fighting over any sort of inheritance, attention can be diverted from the person lying in the bed, whose needs should always come first.

In my experience each of these patterns is more likely to occur when the hard work of planning has not been done. The medical literature shows us that the passing of a loved one can cause a host of issues in those still living. Data demonstrates increased risk for the bereaved of medical problems, anxiety and depression, even financial ruin. And while I have not seen research on this, I imagine that those families who have endured such conflicts can suffer disruption for many years to come.

Yet a small amount of preparation can make a big difference, even save a family.

My first recommendation when complexities arise for a hospitalized patient is to call for support from a Palliative Care team.  We know from surveys that families with palliative care—which aims to keep the patient at the center of the conversation and offers extensive support to the family—have better medical and psychological outcomes for families in the long run.

Even better than calling for a Palliative Care consult late in the game is to lay the groundwork early on, before the patients are unable to speak for themselves.  My recommended steps below will help to keep the patient at the center of decision-making at all times:

  1. Identify the key goals, values and preferences—unique to each person—that the patient holds dear.  For example, what is the lowest acceptable quality of life, below which she would want to be allowed to die peacefully rather than being kept alive on machinery?  How would she feel if she could not take care of her own personal hygiene? What if she were unable to  communicate with her loved ones? Or, perhaps, lost her cognitive abilities altogether. Would she still want to live? There are several tools to get you started on this exploration, including GoWish, Prepare for your Care, and the Conversation Project. This should be an ongoing conversation about a variety of potential scenarios.
  2. Identify a surrogate. Who is the person or persons that the patient elects to work with the healthcare team as his primary representative? Who is most likely to keep the patient’s values in mind, and be able to stand strong when difficult decisions need to be made? Ideally, the entire family is aware of the patient’s preferences and will work together well.  But if “the sister from the coast” flies in (or any of the other common pitfalls arise), it is helpful to have one person ultimately responsible for representing the patient’s wishes.
  3. Insist on ongoing communication with the patient’s healthcare team. Data shows that patients and their families are often in the dark about the realities of their medical condition. One study demonstrated that patients are more likely to learn about a poor prognosis from other patients in the waiting room than from their own doctor. Although the medical community is beginning to address this deficiency through training, many conversations between doctors and patients still don’t get to the bottom line—focusing heavily on medical details and not providing sufficient information about the bigger picture issues, such as prognosis, life expectancy, and what the remaining life is likely to look like. It’s easy for everyone, including your doctors, to hide behind hope and the next procedure or treatment. Don’t wait for your doctors to tell you—make sure to ask, and keep asking!
  4. Document, document, document
    • An Advance Directive allows you to legally identify the surrogate that you chose in #2 as well as to chart out an overall desired approach to care. Conflict can arise easily in these charged moments, even in the happiest families, and having a clearly documented selection by the patient of someone to speak for him can keep conflict at bay. Completing an advance directive is appropriate for any adult, even those young and healthy.  It should not be considered a “one and done” form but should be revisited over the course of one’s life. I recommend revisiting it yearly when healthy and with increasing frequency as your condition begins to change.
    • A POLST form (Physician Order for Life-Sustaining Treatment) is a doctor’s order that is portable (not just valid in a medical facility, but also in your home, an ambulance, or most other states in the union) and lays out what treatments you would prefer to receive or refuse. It is a very important insurance policy for those who do not wish to receive the default aggressive treatments that aim to prolong life at all costs.  It is most commonly used by the frail elderly and those with serious or terminal illness.
  5. Do not procrastinate on planning for financial matters. You may be young and in excellent health, but death is inevitable and, heartbreakingly, young people die or become seriously ill every day. None of us knows when we will die, all we know is that we will. Prepare early so that your death, whenever it comes, is like your life—framed by your decisions. Prepare your estate.  Write a will. Be sure to leave your loved ones with a clear sense of what makes life worth living for you.

In summary, there are many things that can go wrong around critical illness, even in families that are communicative and get along well.  But the good news is that you can mitigate, and sometimes even prevent these occurrences with some preparation.   A good place to start is, a website that takes you step by step through the points above and helps you to pull together and then print out a document with your preferences that can help you fill out a legal advance directive.

You can care best for yourself, and for the ones you love, with some advance preparation. In this way even your final moments will be aligned with your values.

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