Note: Names have been changed to protect the privacy of those mentioned
At the beginning of her nursing career my sister Anita worked in the intensive care unit (ICU) of a major hospital in Los Angeles. As an ICU nurse she witnessed the deaths of many patients. And she sometimes witnessed death-bed family dynamics she found shocking and dismaying – even frightening: fist fights between brothers; screaming matches between parents and children; cruel and cutting remarks between spouses and significant others. Every time Anita would share her distress over such events we would make a commitment to each other to “never be like those families” when the time came and a loved one was on their deathbed or at end-of-life. Alas Anita and I soon learned at my sister Paula’s deathbed that not all family members can, will or want to make such a commitment, thus adding to the stress and pain of an already difficult situation.
"Why is he doing that?!" "Why is he saying that?!"
When Paula was actively dying of metastasized breast cancer I was working as a stress management teacher and had not yet been trained as a grief and spiritual counselor or end-of-life doula. When I look back now at Paula’s last week of life I can clearly see how certain behaviors exhibited by Jay, Paula’s life-partner of 19 years, were - among other things - due to a lack of both mental preparedness and emotional self-regulation skills causing him to say and do things that were frequently irrational and seemingly cruel.
For example: Jay, a personal trainer, body builder and self-proclaimed wellness expert, firmly believed that eating a lot of ice cream in childhood was a key reason why Paula got cancer. The week before Paula died Anita and I fed Paula a last meal of blueberries and ice cream as we knew that both of these foods were childhood favorites. When Jay saw what we were doing he said “You are giving her cancer with that ice cream!”; he then quickly went into the kitchen and made Paula a glass of wheatgrass which she (no longer able to speak) refused to drink by firmly pressing her lips together and shaking her head no.
Many such incidents followed. And when they did Anita at first would get upset and say “Why is he doing that?” or “Why is he saying that?” And my response would always be “That Jay is really something.” Finally, Anita said, “I see what you’re doing – every time Jay acts in hurtful ways you take a breath and say, ‘That Jay is really something’ and then move on. I can do that.” And from then on Anita did.
Some Whys Which Contribute to Difficult Family Dynamics
At the time of Paula’s death I thought that the multiple bizarre and irrational moments Anita and I experienced with Jay must be unusual. Now I know this isn’t true. Since Paula’s death I have been present at many death-bed and end-of-life processes and have repeatedly seen how the stress and uncertainty of impending loss can negatively impact both the dying person’s care and a family’s ability to effectively grieve due to a variety of issues. Most notably those issues include: unresolved past family conflicts (a primary – if not the primary – cause of family conflict at end-of-life); dissimilar values and beliefs held by family members; differing grieving styles and responses; differing stress responses; differing levels of coping and communication skills; and more. These are all common factors that contribute to difficult family dynamics at end-of-life.
Simply put, the answer to Anita's questions of “Why is he doing that?” or “Why is he saying that?” is this: given who Jay was – his belief system, life experiences (including unresolved issues rooted in his own family of origin) and his lack of coping skills - he did not know how to be present to the reality of what was or act rationally throughout my sister’s illness and as my sister lay dying. He just did not possess the inner resources to rationally navigate impending or final loss.
By taking a calming breath and then saying a loud or to myself, “That Jay is really something” and then putting my energy toward the sacred task of helping Paula die in comfort and with dignity I was acknowledging that we cannot control other’s actions or words, only our own.
Some Additional Factors and Strategies
End-of-life is defined as the final stage of a person’s life; it is characterized by impending death and encompasses the period of time when a person is likely to die within the foreseeable future, typically a few months to a year. Active dying is the final stage of the dying process, typically lasting a few days during which a person’s organs and bodily functions gradually shut down.
There are many other factors that can exacerbate tensions when a loved one is at end-of-life (or actively dying), including:
Lack of advanced planning. Due to my work I have become aware of how common a lack of advanced planning is for end-of-life. In fact, many of my clients first seek support due to the mental and emotional anguish and ensuing family conflict caused by a lack of preparedness on the part of the person who has been given an end-of-life diagnosis.
Until ten days prior to her death, Paula was in complete denial that she was dying – as was Jay. (Not surprising as she had denied the impact of her diagnosis for seven years.) Because they had not faced the reality of the situation, no plans had been made regarding end-of-life palliative/comfort care or a funeral/memorial. A lack of knowing Paula’s wishes helped perpetuate Jay’s belief that Paula wasn’t dying because if she was she would surely have told him in advance what to do.
Advanced planning clarifies for all present the dying person’s wishes; the uncertainty that ensues due to a lack of an action plan heightens stress which heightens the potential for conflict. Looking back I wish I had been more assertive in asking Paula difficult questions regarding her wishes for end-of-life care and how she wanted her life to be honored once she was gone.
Mental health and substance abuse issues. Tensions can be aggravated when family members have issues of substance abuse or mental illness, both of which affect emotional self-regulation and increase the likelihood of unpredictable behaviors. When such issues are present it can be helpful to find someone from outside the family – a social worker, grief counselor, death doula, therapist, trusted family friend – to advocate for the dying person, assist in navigating difficult issues and mediate conflict.
Burden of care. Due to factors such as geographical proximity, an individual’s emotional and mental band width, care-giving abilities, and work obligations, the burden of care for a loved one rarely falls equally upon all family members, causing resentments and disagreements to arise. When possible, dispersing and delegating tasks of care can help relieve the burden of care (this works best if there are no past or existing family conflicts present), as can engaging resources or support from outside the family.
Other Strategies for Managing Difficult Family Dynamics
Difficult family dynamics create uncertainty and often chaos, decreasing quality of care, and negatively impacting a dying loved one’s physical, mental and emotional wellbeing. Difficult family dynamics also negatively affect the overall health of the family unit.
Being able to continually ask the question “What is in the best interest of my loved one in this situation?” can serve as a guidepost for fulfilling your loved one’s wishes. Be aware that asking this question can be challenging as the stress of care-giving and impending loss can create the tendency to double down on getting your own personal preferences and expectations met so that you feel less fearful, or sad, or whatever else you are feeling that doesn’t feel good when a loved one is at end-of-life. When this is the case it can be helpful to ask someone from outside the family to serve as a sounding board.
Here are some more strategies for mitigating difficult family dynamics:
Focus on and unify around your shared goal. As a shared goal, the patient/your loved one’s needs and well-being should take top priority. When family members can’t agree on a path forward the first step is ask of the patient “What do you most need/want?” If fulfilling that want/need isn’t possible, the next step is to ask pertinent members of the patient’s medical team for a list of appropriate options.
It can also be helpful for one family member - someone good at organization, decision-making and teamwork – to be designated “team leader” and given the power to move things forward when the rest of the team is deadlocked. This option only works well when there isn’t a history of unresolved family conflict.
When family members are at an impasse or truly cannot seem to find common ground from which to make decisions then engaging outside support so that your loved one receives the best possible quality of care available to them should be explored.
Schedule regular family conferences. Lack of open communication or transparency can cause family tensions to arise. Holding regular family conferences to address pertinent issues, explore options, set a course for the future and validate the challenges of the situation can help create a positive and trusting sense of connection for all involved. Family conferences work best when established ground rules are in place for speaking (with respect for all perspectives and without interruption) and listening (with respect and without interruption).
I once had a client who asked all family members to sign a contract regarding “rules of engagement” for end-of-life family conferences. The contract included items such as: “open and honest communication will be appreciated and honored”; “no laying-on the historical” (meaning no bringing up past conflicts and grievances); “all must speak respectfully and in a normal tone of voice.”; “no one is required to speak”; “all are required to listen respectfully without interruption”; “no name-calling, swearing or abusive language”; etc. While this approach worked well for my client’s family it is not for everyone (note: another client asked me to participate in a family meeting thinking that helping the family set ground rules would keep family members from using abusive language etc.: it did not.)
Everyone Grieves Differently
There is a tendency for family members to think of each other “this person should be like me because we’re family” or “I already know what that person is all about – he/she is family.” This sort of thinking can help create difficult family dynamics at end-of-life because not all family members are alike. And we rarely know people as well as we think we do – even family members. The stress and pain of impending loss can make people act in ways that are foreign even to themselves much less others.
When we can acknowledge that grief is an individual experience different for everyone, including family members, we can then let go of unrealistic expectations of how others should cope and act during one of the most stressful and painful experiences they will ever endure - the loss of a loved one.
