Families can be complicated, to say the least. When they are beautifully loving and caring, it’s one of God’s most delightful gifts. But often, when the well-being of a critically-ill loved one is involved, tensions can flare. We don’t all love in the same way. And, love is often tainted by self-serving motivations or competition for power and influence in decision-making.
In fact, terrible things can be done in the name of love. And, the dynamics of power and influence that can develop among family and loved ones can be shocking. Tensions can escalate as judgments and discord fester. Frequently, childhood politics surface and you suddenly find yourself the seven-year-old kid who used to be bullied by her older sister.
Everyone might sincerely believe they all have the patient’s best interest in mind. Yet, they may have diametrically opposed views about what that would look like and how it is to be accomplished. Unfortunately, all too often family members polarize against each other behind the scenes rather than uniting in support of the patient.
Here are some guidelines to help families navigate these stressful and emotionally challenging times.
Respect the patient’s right to make his or her own decisions as long as deemed mentally competent.
Recently, a client shared her family’s drama around their terminally-ill mother. Behind the scenes, some family members are under the impression that mother is depressed and needs antidepressants. They emailed her doctor urging him to prescribe them. Others are concerned about drug interactions and over-drugging mom. They worry about masking feelings that she needs the opportunity to process. When I asked what the mother wanted, my client didn’t know. No one had asked her. They were too busy campaigning for their point of view behind her back.
Be sure that the patient designates a healthcare proxy before being deemed mentally incompetent.
The person who is appointed as the patient’s healthcare proxy is charged with the responsibility to make all decisions on his or her behalf regarding healthcare.
A client told me that her father was the healthcare proxy for her mother. However, he was terribly uncomfortable dealing with death and dying.
The choice of who to appoint should not be primarily governed by the person’s rank in the family pecking order. Rather, the patient should thoughtfully decide based upon who is most able to communicate comfortably with the patient about their needs and care. It should be someone ablle to advocate for the patient with doctors, nurses and caregivers. For example, a family member might hold a strong personal or religious belief that is quite different from that of the patient. This could prevent that individual from following the patient’s wishes. Therefore, they would not be a good choice to serve as healthcare proxy.
No matter how strong your opinion, that doesn’t make you an expert.
As a family member, you may have concerns about the treatment protocol and care being given to your loved one. Address it either with the patient and/or their healthcare proxy. Do not take it upon yourself to try to direct their care. Feel free to express your point of view, but respect the right of the person who is making the decisions. Be careful not to make others wrong for not agreeing with you.
Clarify, agree upon, and respect a pecking order for the flow of information and influence.
The role of the primary caregiver and/or healthcare proxy should be respected. They typically have the most up-to-date knowledge about the patient’s condition and needs. If you really want to demonstrate your love for the patient, than do everything you can to support this person. Offer your help. Be a team player. Help to keep communications clean and above board within the family.
Avoid the temptation to judge and talk about each other behind backs. If you have a problem, address it directly with the person(s) involved.
Having a loved one who is critically-ill is stressful enough. Do not make matters worse by bringing your personal animosity toward another family member into the situation.
Handle your emotional needs on your own. Don’t act them out around the patient.
It is important to be ruthlessly honest with yourself about how you feel and to deal with that within yourself. Be respectful of the patient’s needs and the normal routine that has been established for the patient’s care.
It is not uncommon for relatives who live at a distance to visit and try to overcompensate for their absence. They may be acting out of guilty feelings by playing the hero or trying to make a larger-than-life impact on the situation.
For example, don’t take it upon yourself to feed the patient two big bowls of oatmeal because that used to be his or her favorite breakfast. Find out what the patient is eating now and stay with that. Also, consider the possibility that if you did manage to feed him or her that much oatmeal it wouldn’t necessarily mean that it was a good idea. They may be fully aware of your need to feel helpful and be eating it to please you even though it will cause digestive distress later.
In most cases, an in-law should focus on supporting their spouse in handling the emotions, tensions and concerns regarding the situation. It is usually not their place to be a major player in decision-making.
There are exceptions. For example, an in-law may be the primary caregiver and/or supervising the day-to-day care of the patient. Then his or her knowledge of the patient’s needs should be highly regarded.
Visitors should always seek the primary caregiver’s guidance about what is in the best interest of the patient. This is especially important if the patient is living in the home or in a nearby facility while other family members are not local to the situation.
Remember that you are writing family history through your behavior. Consider giving the patient a wonderful experience of loving, united family support.
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