By John Saroyan, MD
While National Hospice and Palliative Care Month ended in November, the holiday season is in full swing—a time for family members to spend more time together and, in some cases, notice drastic changes in a loved one’s health. While nobody wishes to have the hospice conversation with loved ones during this festive time, talking about home hospice may be necessary.
Having this conversation is often challenging: dying is an inherently emotional topic for many and worries that hospice hastens death can arise. As such, it’s up to physicians, nurse practitioners, and physician assistants, frequently with the support of nurses and social workers, to navigate the sensitive subject of prognosis and goals of care for patients and their families. While remaining as clear as possible about prognosis, our compassion for the array of emotions that end-of-life discussions may trigger can make the discussion go in a productive direction. This starts with fully understanding the benefits of hospice.
As one of the hospice medical directors for BAYADA Home Health Care, a provider of in-home health care and support services, I have experienced firsthand how the support from hospice can make a positive impact during one of the most challenging experiences a family can go through: a terminal illness of a loved one with a prognosis of six months or less to live.
Consider a patient who has congestive heart failure, shortness of breath at rest, and a history of multiple visits to the Emergency Department or hospital in the past year. Without hospice, his or her next bout of severe breathlessness will likely involve 911, a multi-hour wait at a nearby hospital and no substantial changes in the care plan except an extra dose of diuretic, a change in oxygen flow rate, maybe a dose of opioid or anxiolytic. He or she may also die in the ambulance or ER. Many patients don’t know that with hospice enrollment, the same patient could call his or her team, have a hospice nurse at the home within the hour, and do the same exact medical management the emergency department would have done.
In both cases the condition of the patient, and the prognosis, is the same; yet, in the first scenario the patient uses acute medical services for managing something that is in fact predictable and does not need to have an emergent, surprising and frequently traumatic quality. The latter person may actually live better and potentially even longer, as the stress of an ER visit requiring extended waiting times and sometimes overwhelming decision-making can have a negative impact physically and mentally.
Certainly, a trip to the ER is not the “wrong” choice; but when dealing with a patient who has months to live, I may ask questions such as, “How do you want to spend your time? Is it visiting health care professionals? Is it spending time with family and friends? Where do you want to spend that time?” Everyone has different priorities and personal feelings on the subject. Patients have options when it comes to their end-of-life care—they simply may not be aware of them.
Decades ago, physicians typically made all of their patients’ decisions for them. The model shifted with increased recognition of patient autonomy. Doctors have frequently presented a variety of options for patients to choose from with their families in more recent times. Presently, and with end-of-life care especially, creating an open dialogue from which health care providers can help align their patients’ care with their values, spiritual preferences, personal relationships and feelings is the best way to align clinical diagnosis and prognosis with treatment choices.
In addition to lacking awareness about home hospice, patients may misunderstand what it can offer to them and even their family members – likewise, in some cases their primary healthcare providers may also be misinformed, have preconceived notions or unresolved negative experiences with hospice.
For example, some physicians may still believe that when patients agree to home hospice, they must give up all of their regular, day-to-day medications. Additionally, they may think their patients must relinquish their regular physician’s role in clinical decisions. This does not have to be the case. The best home hospice organizations will work with the patients, their families and their physicians to determine a personal approach to care which aligns with the patient’s wishes and the clinical situation.
Furthermore, it’s a common misconception that once patients begin home hospice, they will be dropped from care after the six-month mark of predicted longevity. What does happen is that the hospice team would come together and collaborate with clinicians, the patient and the family to understand how and why the patient has had the good fortune to live longer than expected; and then they would figure out next best steps together.
It’s also important to note that home hospice extends far beyond the patient—family members are also in need of care. With home hospice, they can lean on hospice staff members for support. For example, even after their loved one passes away, family members of home hospice patients can receive grief support to learn healthy coping mechanisms, attend individual or group grief counseling and work through their emotions at the pace that is right for them.
It’s true that home hospice care isn’t for everyone. Everyone has different personal needs and beliefs, but it is certainly worth having the conversation with patients and their families to see if it’s a fit for them. Even as the end of life approaches there can be moments of joy. Hospice may help foster that possibility and give hope where only despair and frustration existed. A team of healthcare professionals supported by administrative leadership who are entirely dedicated to ensuring a respectful and dignified death doesn’t just change dying—it changes living.
Whether it’s a home health aide knowing just the right joke to tell to make the patient smile or listening to family members in need of venting their feelings, there are little, intangible details that come with home hospice that might ease the emotional and physical burden, if only for a moment. If only for that reason, clinicians should encourage families in need of end-of-life-care discussions to at least consider the option of home hospice with an open mind.
John Saroyan, MD, FAAP, HMDC, is the BAYADA Home Health Care Hospice Medical Director for Vermont and New Hampshire.