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How to Navigate End-of-Life Care Decisions When Family Members Disagree

By Mary McCoy

making end-of-life decisions for a loved oneSadly, many people experience costly and painful conditions near the end of life, which can have serious ramifications on their finances and relationships. These conditions also may require family members to navigate the healthcare system on behalf of a loved one who is unable to do so, which can significantly add to the already existing stress.

Regardless of the inherent discomfort in discussing death, planning for end-of-life decisions is an essential component of sound financial and personal planning. By preparing in advance, you can significantly reduce stress, preserve relationships, and save large sums of money on care.

The Importance of Planning Ahead

Reduce Cost

According to a study published by the Journal of General Internal MedicineMedicare beneficiaries spend an average of $39,000 out-of-pocket during their final five years of life, and 25% of these beneficiaries spent more than $101,000 out-of-pocket. Often, these costs go toward non-beneficial treatments that enhance neither quantity nor quality of life. Examples of non-beneficial treatments include, but are not limited to, unnecessary amputations, placement on a ventilator, placement of a feeding tube, and even CPR.

Unfortunately, many of these non-beneficial treatments are decided upon by family members for a patient who is unable to make decisions on their own. The incidence of non-beneficial treatments may be explained because family members report feeling like grim reapers if they forego available treatments – even if they’re non-beneficial.

Reduce Stress

In addition to unnecessary financial burdens, families undergoing end-of-life healthcare decisions report high levels of stress and guilt, sometimes indicative of long-term mental health consequences, such as post-traumatic stress disorder, complicated grief, and depression. These mental health conditions pose a financial and personal burden of their own, and they often don’t resolve themselves easily with time.

However, according to the Journal of the American Medical Association, having advanced directives in place can reduce family disagreements near the end of life and substantially lower the cost of end-of-life care. Advanced directives also lower the risk of a patient dying in a nursing home or hospital, and lower the risk of family members reporting negative mental health consequences after a death.

making end-of-life decisions for a loved one

Prevent Negative Family Outcomes With an Advance Directive

Without a doubt, the best way to avoid stress and family fallout is by taking preventative measures in advance of a healthcare emergency. The prevention of family turmoil is one of the key components of ensuring a peaceful death, and the most effective way to prevent arguments is to complete advance directives prior to needing them, and then to actually use them.

What Is an Advance Directive?

In general terms, an advance healthcare directive is a written document that a person creates to specify which actions should be taken for their health if they are no longer able to make decisions due to illness or incapacity.

There are two types of advance directives:

  1. Power of Attorney or Healthcare Proxy. This document appoints a healthcare agent to make decisions on behalf of a person who is no longer able to make their own healthcare choices. This is true of 50% of patients near the end of life. A proxy is often a family member, but a patient may elect to appoint a friend or neighbor as a proxy if they prefer. If you serve as a proxy for a critically ill patient, you may be asked whether the patient wants to use a ventilator or feeding tube, undergo resuscitation efforts, treat aggressively or conservatively, or go to a nursing home.
  2. Living Will. This document provides specific instructions for a patient’s treatment. Most living wills have clear language about the use of resuscitation, ventilators, and feeding tubes. If the language in the living will isn’t comprehensive enough to make you comfortable, visit MyDirectives to specify additional types of treatments.

An individual may have just one directive or both, whichever arrangement makes them feel most confident that his or her wishes will be carried out. If that person knows that family members are often contentious with one another, it may be wise to only draft a living will, rather than appoint a family member as a power of attorney. If a power of attorney is appointed in a contentious family (and sometimes even in families that are otherwise peaceful), he or she may end up serving as a lightning rod for family anger and stress.

The specific instructions included in a living will can often prevent family arguments by providing a document for all family members to look at, with directions for patient care. People in crisis have a tendency to feel angry about their feelings of powerlessness, grief, and fear, which can present themselves as explosive arguments between family members. A living will can serve, in some cases, to mitigate these arguments.

How to Establish an Advance Directive

If you are interested in establishing advance directives, there are many free resources available to assist you:

  1. Call Your Local Hospital. Many hospitals have systems in place to assist community members with advance directives, often without cost.
  2. Visit MyDirectives. MyDirectives.com is a free site with virtually everything you need for advance care planning. Furthermore, the site administrators are working to link their online services directly to many hospitals’ electronic health records so doctors can have access to a patient’s wishes upon admission.
  3. Visit National Healthcare Decision Day. This free site provides more information about how to draft your own directives.
  4. Contact a Qualified Lawyer. Lawyers can assist with drafting advance directives, but they will charge according to their rate, which could be many hundreds of dollars per hour.

making end-of-life decisions for a loved one

Mitigating Negative Family Outcomes

Unfortunately, many people in the United States do not have advance directives in place. When families must deal with grief, stress, guilt, and uncertainty, all without direction from an incapacitated loved one, and all within the pressure cooker that is the modern hospital system, tensions are bound to boil over at some point. These decisions are painful and stressful, even within the happiest families. Luckily, most hospitals and nursing homes have systems in place to help your family – even when an advance directive is lacking.

Above all, try to practice active listening skills, which can often disappear when discussions grow heated. If there is disagreement with specific family members, do your best to validate their concerns, empathize with their feelings, and repeat back what they are saying. Sometimes careful listening can help shake loose any anger that is covering up feelings of grief.

When facing end-of-life decisions, utilize the following:

  1. Advance Directive. Always remember to look for and defer to the advance directives. Although most people in the United States don’t have directives in place, about one in three people do have some form of directive. If a patient has a living will, provide the document to the physician immediately. This should stop arguments in their tracks, because the patient’s wishes prior to incapacity will rule out anyone else’s wishes. If a patient only has a proxy and no living will, arguments may ensue, but the directive designates one person to overrule all other points of view. A patient should always choose a proxy based upon their conviction that the proxy will carry out the decisions the patient truly desires.
  2. Designated Decision Maker. If there are no advance directives, the patient will still have a decision maker designated by law. Find out who the designated decision maker is, because this person will also end up overruling other points of view. Most states defer to decision-makers in this order: a court-appointed guardian, a spouse, an adult child or consensus of adult children, a parent, and finally an adult brother or sister.
  3. Social Worker. Unfortunately, even the best listening skills can’t always stop an argument. Enlist the help of a social worker to mediate family discussions. Most hospitals and nursing homes have social workers, chaplains, and patient advocates on staff to assist with mediating these arguments.
  4. Palliative Care Consultant. Request a palliative care consult if a palliative care physician has not yet been involved in the case. Many hospitals have begun to work closely with palliative care physicians because these physicians have received special training on communicating empathetically and clearly about serious illnesses. Traditional physicians may mean well, but also may not be equipped to communicate serious diagnoses with the clarity and tact families need in order to make educated decisions.
  5. Multiple Physicians and Social Workers. If the social worker meets with the family and individuals are still in disagreement, request that the social worker arrange a family meeting with the patient’s physicians, including the palliative care physician. The social worker will likely find a way to pull most or all of the physicians into a meeting, along with the chaplain or social worker, which can diffuse the disagreements through clarifications of the patient’s medical prognosis.
  6. Ethics Consultant. Finally, if you have tried everything, you can always ask for an ethics review. Hospitals utilize ethics committees to address complex cases that raise ethical questions about a patient’s care and prove unresolvable after case discussions amongst family members and physicians. An ethics consultant reviews the case from an interdisciplinary perspective and provides recommendations for decision-making. Such an action may not stop the arguments, but it does bring in another expert opinion to help guide decisions.

Final Word

The sad truth is that many families suffer serious fallout as a result of end-of-life decisions, and they may never recover. Further, if decisions need to be made quickly, the healthcare proxy or decision-maker may not have time to come to terms with feelings of grief, loss, and guilt. This is all the more reason to create a living will and power of attorney – in order to prevent further suffering for your loved ones. If feelings of guilt, complicated grief, and post-traumatic stress occur following the loss of a loved one, consider enlisting a therapist to help with recovery.

How has your family prepared for the questions that often accompany medical decision-making?

Mary McCoy
Mary McCoy, LMSW is a licensed social worker who works closely with individuals, families, and organizations in crisis. She knows first-hand how financial choices can prevent and mitigate crises, and she's therefore passionate about equipping people with the information they need to make solid financial decisions for themselves and their loved ones. When Mary isn't on her soap box, you can find her hiking, jogging, yoga-ing, or frolicking with her family.

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