A sometimes overlooked risk for hospice patients is suicide. The hospice and palliative care provider Compassus, one of the largest hospice providers in the country, has launched an internal campaign to help its employees recognize the warning signals and identify possible interventions.
Compassus, a portfolio company of the private equity firm Towerbrook Capital Partners and the healthcare system Ascension Health, operates more than 200 community hospice, palliative, and home health services in 30 states.
Hospice News spoke to Kurt Merkelz, MD, Chief Medical Officer of Compassus, about how suicide affects hospice patients, families and employees, the role of the interdisciplinary team and how providers are responding to it.
Kurt Merkelz, MD, photo courtesy Compassus
Can you help me get an idea of the prevalence of the extent of suicidality in terminally ill seniors?
We need to consider the limits of hardship an individual can endure. An important role that palliative care and hospice care professionals play is to help patients and families cope with the emotional and physical stress of dealing with serious illnesses.
When you are dealing with excruciating pain, it is difficult for both your mind and your body. If you pass this hourly on to an elderly person who has a serious illness, possibly a life-limiting diagnosis, or severe symptoms, the mental and psychological toll is severe.
Older adults have a higher suicide rate than younger adults, especially those with a history of psychiatric illness, mental disorders, or uncontrolled pain. We see high rates of suicidal ideation among these 65 and older men and terminally ill cancer patients.
It also goes beyond the patient. Surviving family members are at increased risk of suicide after losing a close relative, and caregivers and healthcare workers who have high rates of burnout and vicarious trauma from caring for people during this COVID pandemic are also at increased risk .
Are there data comparing suicide rates among hospice patients with those in the general population?
The high rate of suicide among cancer patients has even declined over the past 20 years, hand in hand with the increasing use of hospice and palliative care. The authors of a recent study show that suicide rates declined between 2000 and 2018. During the same period in the United States, we saw a steady, significant increase in hospice use. The study was published in the latest issue of the Journal of the National Cancer Institute. The authors concluded that access to hospice and palliative care plays an important role in reducing the suicide rate among cancer patients.
There is still more to be learned and gained from this, especially when we look at equity in healthcare. COVID has accelerated our process of data usage, how we access, process and communicate data. It accelerates our understanding of the social determinants of health. We are realizing more about the differences that exist between ethnic and racial communities. This will be another layer that we will uncover and that will help us better target specific treatments and recommendations.
What signs can help providers identify hospice patients who may have thoughts of suicide?
We need to identify those who are at high risk and recognize those red flags. Some patients may have a pre-existing mental health problem or substance use disorder. Last year we saw the highest number of deaths related to opioid drugs in the United States.
Factors that increase your risk include a lack of social support, the recent loss of a spouse or other loved one, or a family history of suicide. We look for signs of withdrawal from family and friends, unusual excitement, or reckless behavior. The patient can talk about feeling hopeless or a burden to others.
Some may lack the ability to express emotions. They appear to be less influenced by experience or have difficulty finding happiness or joy. These are all signs to watch out for. A person may say that they want to die or that they do not know why life is worth living, but we can hardly expect such statements.
How does this provider react when some of these risk factors are identified? Also, how do you communicate with the family about what is going on?
It takes time, effort, and trust to uncover these emotions. Talking about it is incredibly difficult. I’m referring to an acronym, NICE [Notice, Invite, Challenge, Encourage].
Note: Be aware of the people around you and take the time to see how people are acting and speaking. When we’re so busy as clinicians, sometimes we move fast. We come in, take care of it, and then leave. We don’t always take the time to really sit down and assess how the patient is doing, what they’re worried about, or what they’re afraid of. This has to be part of our actions to identify the risk and examine how we communicate with the patient, family and other stakeholders.
We need to invite people to share their feelings and communicate with us about their experiences. We must challenge them to see themselves as worthy individuals and that their lives have value at every stage, even until death.
We need to encourage people to seek help when they feel overwhelmed. The first thing our clinicians do with the families is we talk about it and ask these in-depth questions. How do you feel? Have you ever thought of harming yourself? Do you have plans to end your life?
When there seems to be a real risk, we let other members of the care team know and put in place a plan so that the patient is not left alone and we contact them more often. We involve family members and help them get the emotional and social support they need.
If they have symptoms that are contributing to them, we need to make sure we control those symptoms and are working to improve them. People shouldn’t have to do this alone.
This is an awkward question, but I think we need to address it. There is a public debate about whether a terminally ill patient has the right to end his life instead of suffering from his illness. Nine states and the District of Columbia have laws that make this possible. How does this topic fit into what we are discussing here?
That is a completely different topic. There are components to a doctor’s euthanasia that need to be considered. To go this route you need to be screened for depression. If we were to speak to proponents in this direction, they would say that getting medical attention and dying is about life. These are not individuals who want to die. They have a situation where they are trying to have control and autonomy.
This is very different from suicide in those with deep hopelessness who feel helpless and overwhelmed. It’s a very different situation. We need to look for evidence that a patent is contemplating self-infringement. That needs attention and awareness.
Do you think there are sufficient resources to improve the mental health and emotional well-being of hospice patients? It goes without saying that social workers are also part of the interdisciplinary team. What does Medicare Benefit enable in relation to these types of services?
Hospice and palliative care is about achieving good patient outcomes, managing pain and symptoms, and meeting their spiritual and social needs. Dealing with the end of life and serious illnesses is complex and requires all members of the interdisciplinary team. It is not a job for one person, the needs of the patient and the family are central.
[The U.S. Centers for Medicare & Medicaid Services (CMS)] This year, the way we report the hospice item set, which is part of the hospice quality reporting program and a requirement for our payment, has changed this year. Medicare has confirmed the importance of only two disciplines, nursing and social work. That’s extraordinary.
They replaced measures that dealt with the visits of the interdisciplinary team with the so-called “hospice visit in the last days of life”. It only collects damage data from people who have visited a. have received [registered nurse] or social worker in at least two of the last three days of life. This flawed methodology invalidates the impact on patient outcomes of chaplains, licensed practical nurses, and carers who provide tremendous help to patients and families.
I think of my father in the last phase of his life, very well, with no active symptoms. My father absolutely hated facial hair. He came home from work every day, showered and shaved before drinking his martini with my mother. What he needed in his last days was the helper who came over and shaved him. It gave him a lot of comfort.
CMS uses a flawed methodology that does not devalue nurses or social workers on the interdisciplinary team. Chaplains provide some of the most important nursing care a dying patient can receive. Pastoral care is one of the four pillars of hospice care alongside medical, psychological and social care. This was identified by Dame Cicely Saunders, the founder of the modern hospice movement.
CMS does not require that pastoral care workers report claims. Without this data, CMS has blocked its view of the critical worth of pastors, hospice workers, and LPNs who do amazing work every day.
Hospice care is one of the most valuable services in our healthcare system today. Hopefully we can keep sharing this with CMS and others to help them see the importance of all members of the interdisciplinary team.