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HD InsightsBeyond ‘Care as Usual’

Integrating counseling into clinical care

More and more commonly, patients who see their primary care physicians and have unmet psychosocial needs are asked if they would like to also consult with a social worker or behavioral health provider.

In the neurology arena, this is still met with surprise, a reaction we experience in our Huntington’s disease clinics. Many families anticipate that their neurologist will assess their current symptoms or ask them how chorea is impacting their day-to-day life and so on. Families are advised they may consider certain medications or rehabilitation services to address any deficits, but few anticipate discussing their inner experience coping with the stress of a genetic neurodegenerative disease.

This surprise element can be difficult to overcome. Conventionally, time with clinicians seems to shorten with each return visit, and the likelihood that you will recognize a familiar provider from the last time you were in seems lower and lower. HD and movement disorder clinics are experiencing pressures from institutions and insurers to keep visits brief and billable services high. However, it is detrimental at best, and irresponsible at worst, to provide care “as usual” when we see multiple generations of families disrupted in their efforts to live flourishing lives of meaning and purpose without an end to this heritable progressive disease yet within sight.

Patients have grown to expect they won’t be discussing their experiences and inner life, when they are accustomed to being shown the door.

Integrated behavioral health services are not new to outpatient care, but their addition to outpatient specialties may be an answer to this conundrum of clinicians’ limited time to address the ongoing psychosocial factors impacting well-being. These services are increasingly common and are there to address the complex issues impacting a patient’s mental health that are not often able to be treated by one specialist in the time allotted. These services provide a path for those who are suffering to be noticed and prevent them from walking out of their care provider’s office without their inner subjective experience being expressed.

We know there are those who slip by unseen, and we know the numbers when their sufferings go uninterrupted. Over 49,000 Americans died by suicide in 2022, by the CDC’s current estimate. We have heard the stories, but there are always the personal ones that stick in our hearts and our throats.

One gentleman was part of our clinic for years and had progressed in his disease and dealt with periodic mood changes. Despite our outreach, he had not come in to see us in almost two years. Finally, our team had a telehealth visit with him. He discussed how he had explosive outbursts at times, but how these had been less frequent over the past three months. His wife sat beside him and expressed that she was proud of how well he seemed to be coping with things. He did need more assistance at times, and it was difficult to pull him out of the hole when his mood bottomed out, but today he was having a good day and planned to come back in person in six months.  

We asked him about suicide that day and he denied these thoughts and did not seem to want to spend more time than necessary on this visit.

We did not see him again in six months. On Sunday evening, two days after the visit, I received a call that he had died a violently self-inflicted death.

This is not a common story in our clinic, but it is a reminder that a frequent schedule of visits and helping patients find behavioral health services within or outside our clinic is important. We had only a few critical moments to make an important connection with this patient. We did not get the opportunity again. While we can’t always change the scenario, the ability to connect at the right time, and with continuity, does impact families and a host of people that may not physically be in clinic today, but are behind our patients, nonetheless.

We have an opportunity in multidisciplinary care teams to each play to our strengths. We can form the relationships that allow our patients to be attended to in their desperate moments and across time when they return to us again and again for their care. The more consistent, team-based interaction we have with patients experiencing these challenges, the more able we are to anticipate precipitous changes in behavior and mood and prevent tragic losses.

Each provider is given this opportunity within their discipline, and as a social worker and mental health provider, I can confirm that the ability to connect quickly and investigate the story behind the symptoms is a critical skill to develop and implement if we are to treat our patient’s disease as just one aspect of their well-being.

A young woman came to see us for her own care four years after her mother’s death. She had her own positive genetic testing years before and had been to our clinic for her mother’s care for years, but had not come back in the interim because of the memories and the reminders that she was not ready to revisit.

I met her at her first return when she was already having more difficulty sleeping, feeling more irritable and quicker to snap at her loved ones. She was not sure why she could not focus at times, therefore finding her work was becoming more difficult for her to complete. Our neurology provider completed her exam skillfully and drew out significant contributing factors such as her alcohol use, increased responsibilities at home and at work, and her history of ADHD. We discussed the need for a neuropsychological exam to establish a baseline and considered starting medication to address the changes in her mood and sleep.

I asked if she was willing to spend a few more minutes talking after her exam, as I had some resources and thoughts that might be useful to her. It was then that we had the opportunity to fill in the story behind her initial description. We discussed that the holidays were coming up, including her mother’s birthday, the acute reminder of the reason her mother was not present and of the reason that she was in the office with us today. We talked about why this kept her awake at night and why the alcohol helped, but also how it did not. She was in a new relationship that mattered to her now, and with more weighty responsibilities, she was concerned that she would self-destruct and lose the things she worked so hard to achieve.

We began here and met regularly for four months to address grief and loss, generational challenges, behavioral strategies for improving health, and we challenged her beliefs about her own future. We closed our sessions for the time being with her recognizing that thoughts and experiences were factors that impacted her health and that the feelings she came in with of hopelessness and being overwhelmed may come back in waves with the return of anniversaries, or in new forms as time goes on. She now had awareness and skills that she did not before and knew that our team would be there when she came back again, hopefully this time more as supporters rather than reminders of the loss of her mother.

This sort of integrated service requires dedicated resources, but each specialty service also supports the others in turn. With a comprehensive team, our hope for our patients is that they are seen in their moment of need, and our team can collaborate to address all of their needs in concert.

A team that considers all aspects impacting a patient’s well-being is balanced in a way that does not hinge on one provider’s ability to do it all, and we can extend care to more patients as a result. We can catch those warning signs and subtleties that could get past one provider, and can account for the patient’s whole story, that began long before they came to see us for care. We can always recall that we are working with a complex disease that does not yield easily, but we can remember that treating the person in full — addressing their full range of experience — improves lives and opens the door for someone to come back.

Designing and implementing integrated services

Here are some initial questions and resources to consider when thinking about how to design and implement integrated services, with specific attention to behavioral health and counseling services:

  • Are your patients able to reliably access counseling services and psychotherapies?
  • Are you or your behavioral health professionals able to provide this capacity with your current resources?
  • What training would be needed for you providers or clinic to adequately provide integrated behavioral healthcare?
  • Do you have access to higher levels of care for referral in the event of crisis?
  • Are your behavioral health providers qualified and structured within your institution to implement therapies reimbursable by insurance plans?
  • What evidence-based therapies are relevant to the patient issues you are seeing?

Have a Safety Plan

Always make safety planning available and provide the contact for the 988 Suicide and Crisis Lifeline to families and individuals experiencing mental health-related distress or worried about a loved one who may need crisis support. The lifeline connects you or your patients with a trained crisis counselor and the service is confidential, free, and available 24/7/365.

Related Articles and Further Reading:

Agency for Healthcare Research and Quality. (Ed.). (n.d.). What is Integrated Behavioral Health? The Academy for Integrating Behavioral Health and Primary Care. https://integrationacademy.ahrq.gov/about/integrated-behavioral-health

Crowley, R. A., Kirschner, N., & Health and Public Policy Committee of the American College of Physicians*. (2015). The integration of care for mental health, substance abuse, and other behavioral health conditions into primary care: executive summary of an American College of Physicians position paper. Annals of Internal Medicine, 163(4), 298-299.

Hunter, C. L., Goodie, J. L., Oordt, M. S., & Dobmeyer, A. C. (2017). Integrated behavioral health in primary care: Step-by-step guidance for assessment and intervention.

Robinson, P. J., & Reiter, J. T. (2007). Behavioral consultation and primary care: A guide to integrating services. New York: Springer.

About HD Insights

Our mission is to promote, disseminate, and facilitate research on Huntington’s disease. To fulfill this mission, we are guided by an outstanding editorial board that includes representatives from three continents, academia, industry, and the HD community.