From Home to Higher Care: Strategies for Difficult Conversations

Image via Bruno Aguirre

I recently found myself in the midst of a brief, but difficult and illuminating conversation. I was called and asked to provide information to a patient and their family about skilled nursing facilities, the places people sometimes go to recover and regain their strength after an injury or significant illness. Some of these facilities are standalone and some of them are housed inside of nursing homes, the mention of which can stir up significant anxiety for patients and families. 

I walked into the patient’s room ready to hand them the usual list of information that we provide in these situations. My plan was to quickly introduce myself, state my reason for being there while simultaneously handing someone, anyone, the paper and then quickly exit from the room. 

Upon entering I was greeted by two women. One of them was older—she was seated a few feet away from the hospital bed the patient was laying in. Her smile was kind. The other woman was much younger and seated much closer to the patient. Her chair had been pulled up right next to the hospital bed and she was positioned only a few inches away from it. 

They both greeted me, which was clearly something the patient would not do. Not for lack of want or know how, but simply because he couldn’t. His illness had affixed him to hospital bed and left him weak and confused. His eyes looked distant and I doubted if he could understand anything that was happening. 

If there was any level of understanding of what was happening and an emotional reaction to it, it was being reflected through the face of the young woman sitting next to him. She looked anguished, on top of looking exhausted. Her weariness only became more evident as we began to talk about the process of sending her loved one to a facility. 

The conversation actually was relatively brief, due to the fact that I wasn’t very effective in terms of providing easy answers. As is often the case in this profession, the thing that ended up being of most value was my presence rather than any instructions or perspective that I could provide. 

This experience is a reminder that in situations like these, the role of a social worker and a therapist is to provide an emotional container and act as an ethical guide and translator of the patient’s reality. 

Understanding the Emotional Landscape 

It’s important to understand the emotional landscape the therapist is traversing. By the time this conversation takes place the patient is dealing with a whole host of things. Loss of independence as well as the potential loss of their familiar environment. Both of which can transform into a fear of institutionalization and grief over their declining abilities. The therapist must find a way to act in the best interest of the patient while also preserving their dignity and sense of autonomy however possible. 

While doing so they must also manage the emotions of the family members. Their consideration of options such as placement in a facility does not come without its own modicum of shame and guilt. For the family, acting in the best interest of the patient can simultaneously feel like supporting them and giving up on them. This ambivalence can be a source of significant intrapersonal and interpersonal conflict and it is also the therapist’s job to help manage these feelings. 

Reframing the Decision: From Placement to Support 

One way of managing these challenges is by reframing the situation and finding new language to describe what is happening. Usually in these situations, the mild euphemism that hovers in the background, the elephant in the room, is that asking for more help is framed as giving up on your family by wanting to put them in a nursing home.

This negative association can even exist within the belief system of the therapist. If so, the therapist must clarify first for themselves and then the patient and family members, that increased care does not equal decreased love from the family. 

Strategies for Facilitating the Conversation 

I felt anxious before walking into the patient’s room on account of the fact that I did not know what I was walking into. Reviewing a medical record can provide some clues about the problem you’re addressing, but it cannot reveal who a person is or how they will behave in the exact moment you encounter them. For that reason it can be helpful to ground the ensuing conversation in the factual. In this situation, that would include discussion of medical complexity, mobility issues, and concerns about safety. None of which should be talked about in a way that implies blame or judgment, but as realities that are the natural result of multiple developments and need to be addressed. 

Validate Without Amplification 

My job was to provide resources, which I did, but more importantly I provided presence. I sat with the patient and family in the midst of their ambivalence and tried to help them parse through it. To separate the facts from their feelings. 

This implies listening and reflecting back what has been said, and more crucially, what hasn’t been said, but has obviously been felt. What it does not imply is that the therapist should offer up empty platitudes or false assurances. Rather than offer false hope, the therapist should simply allow space for mourning the loss of what was.

Nothing I did would strengthen the resolve of the tepid-looking woman I now knew was the patient’s wife. Nor could I do anything to lift the fog of exhaustion on the daughter who was seated at the bedside. I wasn’t supposed to—answering their questions and attending to their concerns was enough. 

Include the Person Needing Care Whenever Possible 

The patient remained distant, at a safe remove from the conversation. Even in such cases, the therapist still has an obligation to look for moments of lucidity within the patient. To locate their capacity for understanding and try to safeguard it. To the extent possible, conversations about the patient should never take place without them. Their voice should be included. Their preferences and values respected, even if only in ways that are small but meaningful. 

The therapist can help the family to balance their need for autonomy with the need for safety. Their value lies in their ability to be engaged without over-identifying, which allows them to act in the best interest of the patient while maintaining appropriate professional boundaries. 

Holding Care & Compassion 

It is necessary to help the patient and the family to acknowledge the fact that there is no “perfect” option in these situations. At least not from an emotional standpoint—the choice is always difficult. If the patient and family can accept this limitation it frees them up to make a good enough decision. One that prioritizes seeking care, even if it means making significant changes. One that can rightly be viewed as an act of love and responsibility. 

The job of the therapist is to help others by showing them how to tolerate complexity rather than by eliminating their pain. It is not about making the specter of choice painless, but making it more humane.