Author Archives: Dianne Savastano

The “Art and Heart” of Family Meetings in Hospital Settings

Relationships with our clients and their families often begin when they are in crisis precipitated by an impending discharge from a hospital. By the time they call, they are fearful and sometimes angry. In our experience, four principal factors lead families to this point: 

  1. Difficulties with communication
  2. Nontransparent processes related to discharge planning
  3. Lack of understanding of the pressures posed by insurance coverage requirements
  4. Inexperience on the part of hospital personnel to fully appreciate what it takes to care for a very sick person at home

This month, I explain how we use a family meeting as a starting point to get things back on track. As our colleague Anne Jacoby likes to say, to be successful, these meetings require both art and heart!

What Is a Family Meeting?

As I have mentioned in several previous newsletters, discharge planning begins upon admission. Things happen quickly in an acute hospital setting and most of the time, a plan is outlined that is well communicated, understood, and agreed to by all involved. When that does not occur, the person to reach out to (immediately) with a request for a family meeting is the Case Manager.

Specifically, you should ask that the following team members be present: 

  • The physician overseeing care
  • The nurse responsible for the creation and 24-hour execution of a nursing care plan
  • Any rehabilitation professionals involved
  • The case manager 
  • Others as noted below

Should you encounter resistance to scheduling this meeting promptly, call the person in the hospital responsible for providing support and information, helping determine healthcare options, resolving disputes, and working closely with patients, relatives, and caregivers.

The title of this professional will vary depending on the hospital. They may be called a patient advocate, patient liaison, ombudsman, patient experience officer, or something else. Sometimes there is a department called Patient Experience; other times these people work with the risk management professionals.

Additionally, all hospitals have a Chief Nursing Officer and a Chief Medical Officer who can be contacted.

Planning for a Family Meeting

It is critically important that you prepare in advance for such a meeting by first deciding who, besides the patient, will be present. Then do the following:

  • Assign someone to lead communication during the meeting.
  • Assign a scribe for the meeting, so you do not have to take notes and instead can pay close attention to what is being said, ask for clarification as needed, and formulate additional questions.
  • Create an agenda with a clear objective and specific items. Share the agenda in advance, so that you manage everyone’s expectations.
  • Research and have clear documentation with you about insurance coverage, including what levels of care are covered and what the criteria are to access those levels of care. (This is not easy to do and requires that you read your Evidence of Coverage document and call your insurance company for clarification about anything you do not understand.)
  • Commit to being curious, forthright, honest, and open to listening to others.

What to Expect in the Meeting

Begin by stating the goal. You may say something like: 

“It is our goal to have a better understanding of the health status of our loved one, and a clear understanding of the proposed discharge plan. We can then set priorities for the next sequence of events that must happen to achieve a safe discharge. We prepared a written agenda so that we can be sure to discuss each of the agenda items.”

Here is what you should expect from those present:

The physician overseeing care should provide a comprehensive update on clinical status and outline future care needs.

The nurse should review the current 24-hour nursing care plan to include a discussion of medications and the method of administration; care of wounds and/or equipment needed for care; and a description of what the patient needs assistance with, such as getting out of bed, eating, toileting, bathing, and dressing.

The physical therapist should provide the outcome of their evaluation and recommendations for ongoing rehabilitation from physical, occupational, and speech therapy. (You may request such an evaluation if one has not been done.)

The case manager should provide an update on the proposed discharge date, to what setting, and the status of insurance coverage. It is their role to match the care needs with an appropriate healthcare setting and to initiate communications with that entity and with the insurance company to ensure coverage for services.

The patient advocate should ensure effective communication occurs during the meeting and focus on outlining an action plan with proposed periods in which to complete it. This could potentially lead to a longer hospital stay, giving the family time to execute their portion of the plan. That could include visiting alternative healthcare settings such as a Skilled Nursing Facility (SNF) for short-term rehab or long-term care environments, or securing needed durable medical equipment and making physical accommodations in a home.

The Important Role of Insurance

Like it or not, insurance coverage rules often drive decision making in discharge planning. Hospital personnel are very familiar with how it all works and operate within their understanding of the coverage parameters. They tend to use a lot of “insurance-eze,” much of which most families don’t fully understand; clear explanations and time to process options are key. I highly recommend you do the following:

  • Enroll in your insurance member portal. Focus on fully understanding these four benefits: Inpatient Hospital, Skilled Nursing Facility, Home Health Care, and Durable Medical Equipment (titles may be different in some policies).
  • Read all the requests for authorizations and approvals for care.
  • Call the customer service representatives and internal case managers at the insurance company for questions and explanations.
  • Escalate any concerns within the insurance company. This may include formal insurance appeals according to the rules outlined in the policy.

Summary

It is always my hope that professionals in hospital settings are carefully educating and guiding families toward a successful and safe discharge, thus minimizing the risk of an emergency readmission.

In the event this is not happening, speak up right away. If you are still not satisfied, escalate your concerns and request a family meeting. In our experience, while these meetings may start out a bit contentious, when managed well and when clear explanations are provided, positive outcomes result.

We All Age Differently

Presidential candidate Nikki Haley’s recent comments about her parents — suggesting that all people decline cognitively as they age — got my attention. It’s simply not true and it made me angry.

However, as someone prone to action rather than anger (!), I decided to write today’s newsletter, both to combat age-shaming, as well as to provide insight into preventative healthcare and assessments of cognition.

My Recent Primary Care Visit

I have had the same primary care physician for more than 20 years. We have a fabulous relationship and I feel fortunate to be working with her. At this point, of course, I have certain expectations about how my yearly appointments progress.

But at my last visit, the medical assistant said that since I had recently turned 65, we would be conducting an Initial Preventive Physical Exam (IPPE)Also known as the “Welcome to Medicare” preventive visit, this exam uses diagnostic, screening, and physical examination tools to practice prevention, promote good health, and establish a baseline upon which to measure future evaluations. All positive goals that we espouse!!

Medicare pays for just one IPPE assessment per lifetime and it must be provided within the first 12 months after the start of Part B coverage.

Note that the IPPE is not the same as an Annual Wellness visit (AWV). This examination is for patients who’ve had Medicare coverage for longer than 12 months after the month they became eligible for Medicare Part B and who didn’t have an IPPE or AWV within those past 12 months. 

Yes, it is all confusing, but we love the focus on prevention!

Baseline Screening

The IPPE has nine components, two of which caught me off guard. Not because I was unaware of them, but because I felt much too young to have these tests done (another reminder of the milestone I had reached!). These two tests are for depression and cognition.

The truth is, despite having attended hundreds of appointments with clients and family members during which these tools are used, I found myself becoming really anxious about my performance. It was humbling, but it gave me greater insight into what clients experience as well as how my presence during these tests may further add to their anxiety and affect their performance.

Testing for Depression

To test for depression, a physician can select from various standardized screening instruments recommended by the American Psychiatric Association. Being tested for depression did not bother me too much because, fortunately, I’m in good shape in this regard. 

But I am pleased that this has become standard, as depression often goes undetected and can have major implications.

Testing for Cognition

This test, on the other hand, threw me. As with depression, there are numerous tests used. The cognitive tests focus on identifying early signs of cognitive impairment and/or dementia. The Montreal Cognitive Assessment (MoCA) is the one I see most often in primary care practices. Impairment level is based on objective scoring, with a maximum potential score of 30. Another test, less frequently used, is the Mini-Mental State Examination (MMSE)

One element of the MoCA requires repeating five spoken words immediately, then again five minutes later. Happily, I could recall the words — not just five minutes later but for days afterward. (I can only remember three of them today. Hmmm!)

The other element involved drawing a clock with the hands indicating a time of 10 minutes to eleven. Fortunately, I did just fine with this one, too. But I had a chuckle thinking about one client whose husband lovingly helps her practice before each visit to her neurologist!

Just the Beginning

One of the most important things to remember about these tests is that they are not the end, but the beginning of an assessment. Their primary use is to determine if a person requires further testing, to rule out medical causes of decline that could potentially be reversible, or to identify exactly what someone may be experiencing. 

These additional tests are part of a neuropsychological evaluation which is conducted by a neuropsychologist. They provide much more detail regarding brain function by assessing mental capabilities such as reading, the use of language, attention, learning ability, reasoning, memory, and problem solving, as well as mood and behavior.

Summary

I hope that we can all embrace aging for ourselves and our loved ones, and that we do all we can to stay as healthy as possible and enjoy our time on this earth. Prevention is key, as is early detection of issues such as cognitive decline so that, potentially, its progression can be delayed. Towards that end, establishing a baseline of cognitive functioning is important! 

My very wise father, who is approaching his 90th birthday in June, takes great care of his health and we both help mom take the best care of hers. He has always said that getting older is much better than the alternative and that looking down at the green grass is better than looking up at the brown roots! Both points of view make me smile.

Suggested Reading: Hospice Care

Last month, I wrote about Hospice care and Medical Aid in Dying. I described how services offered by Hospice Care are designed to wrap around care a family might provide to a loved one at home. I mentioned seven services but forgot to include one that is invaluable: 24/7 support via telephone from a Hospice nurse who can offer advice to a caregiver. 

Many of the calls Hospice nurses receive are about the family administering the medications used to decrease a person’s anxiety, promote their comfort, and prevent their suffering. Sometimes, the calls can result in an in-person visit to help a family troubleshoot issues.

On a related note, here is an article about an emerging professional role for “death doulas” and how they can provide an extra layer of support for families.


Another excellent article on disparities in end-of-life care is here.


Finally, this is a good article about why Americans are uniquely afraid to grow old.

End-Of-Life Care

My interest in this topic began as the Hospice Movement was developing in the 1970s and early 80s. In my final year in college, I took a course called “On Death and Dying” in which we used Elizabeth Kubler-Ross’s book as our text. As I began my career providing direct patient care to hospitalized individuals, I witnessed the passing of so many people. Some of those experiences were heart-wrenching as the individual and family suffered greatly.

In contrast, some deaths were beautiful. I will never forget the day, during a pediatric rotation as a student, that I observed a nurse whose responsibility for her entire shift was to hold and comfort a dying baby. The other nurses eagerly took on additional patients, allowing the nurse to focus exclusively on this child.

As a young nurse myself, I sought to influence the care provided prior to a person’s death, to ensure it was humane, holistic, inclusive of family members (when possible), and offered in a way that promoted comfort and minimized suffering. Like Elizabeth Kubler-Ross, I too wanted individuals to die with dignity.

Hospice Care

In 1963, Dame Cicely Saunders introduced the idea of specialized care for the dying to the United States in a lecture at Yale University. In 1974, Florence Wald, along with two pediatricians and a chaplain, founded Connecticut Hospice in Branford Connecticut. 

Over the following years, hospice care became a benefit supported by both Medicare and commercial insurances. Today, it has evolved to include a bundle of services. To be eligible, your physician as well as the hospice doctor must certify you have a life expectancy of 6–12 months. If you choose this level of care, you forgo any curative treatment.

Although hospice care has become more normalized, it is often not understood and therefore underutilized. Most people I encounter either believe it is a place you go to die or that it involves nurses coming to your home to care for you 24/7 until you die. Neither of these is accurate.

Rather, hospice care was designed to wrap around care a family might provide to a loved one at home. In fact, 98% of hospice care is delivered this way. It includes:

  • Care from nurses who visit your home, but generally no more than 1-2 hours per week
  • Physician services most often provided through consultations with the nurses (you don’t usually meet a hospice physician when receiving this care)
  • Durable medical equipment such as a hospital bed, wheelchair, or lift device to promote your comfort and to assist others with the challenging work of physically caring for you
  • Drugs for the purpose of managing pain and anxiety symptoms
  • Some nursing assistant or homemaker services, but generally no more than five hours per week, usually for assistance with bathing
  • Social services
  • Spiritual and grief counseling for both the individual and the family

This care poses challenges for families, so a great deal of organization and creativity must be employed. This may include shifts by individual family members and friends, possibly enhanced by some privately-paid nursing assistant services.

In-patient hospice care does exist, but fully paid insurance coverage is only for those who meet very specific clinical criteria, such as pain that is not controllable at home. Some individuals may go to a hospice house to spend their final days, and although the skilled services may be paid for, room and board are not and can cost upwards of $5000 per month.

Palliative Care

Palliative care is defined as, “an approach that improves the quality of life of patients and their families facing the problem associated with serious or life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

Palliative Care can be a precursor to hospice care and may be provided by the same team of hospice nurses and physicians. Unlike hospice care, palliative care is based on patient needs, not prognosis, so these services can be an added layer of support and provided alongside curative treatment. 

Palliative care professionals encourage individuals to become active participants in their own care. They assist with shared decision making that takes into account the patient’s goals and preferences before embarking on new treatment protocols and pain management techniques.

Examples of our clients who have used palliative care services include:

  • A woman undergoing chemotherapy for a cancer diagnosis made six years previously and for which she received numerous rounds of chemotherapy, radiation therapy, and surgery
  • A man with progressive heart failure for whom aggressive medication management was the only option
  • A man with a progressive neurologic condition for which no treatment is available
  • An older client with chronic pain from severe arthritis for whom surgery was not an option due to numerous underlying medical conditions

Medical Aid in Dying

Medical Aid in Dying is an end-of-life choice that involves the prescription of lethal medications to a consenting patient who can self-ingest them. Legislation has been passed making medical aid in dying legal in 11 states, with legislation under consideration in many more.

A recent study found seven reasons individuals make this choice:

  1. To reduce suffering
  2. Because of an inability to enjoy daily activities
  3. Inadequate pain control
  4. So as not to be a burden to others
  5. Because of the loss of dignity
  6. Because of the loss of autonomy
  7. For financial concerns

This movement remains controversial and is often misunderstood. What most people do not know is that individuals must go through a rigorous approval process with two independent physicians determining the person has six months or less to live, that they are making an informed decision, and that they are mentally competent to make that decision. 

Several of my colleagues in the field of private healthcare advocacy work in this space as it is difficult to accomplish this choice, especially if a care partner and/or support system is not available.

Summary

Just this past weekend, I was coaching a young woman interested in becoming a nurse. She asked me which aspects of nursing I liked best. I answered that it was the personal and intimate relationships developed through excellent communication, assessment, and problem-solving skills that made a difference to the care of individuals and families. 

I then found myself describing how this happens along a continuum of care and that it can be most gratifying as people approach end of life; it’s a time when excellent nurses are especially important. I hope she makes the choice to go down this path!