(Dr. Schroll is a health care provider primarily located in Chico, CA. She has 23 years of experience. Her specialties include Family Medicine, Hospice & Palliative Medicine. Dr. Schroll is affiliated with Enloe Medical Center and is a consulting physician at Butte Home Health & Hospice. This article originally appeared on MEDPAGETODAY and is used with permission.)
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During a recent meeting with our hospice team, several staff members raised concerns about the limited understanding of the signs of dying and appropriate interventions to care for patients at the end of life. This is a particular challenge in the facilities where our patients reside — nursing homes and assisted living facilities. In another example, our social worker expressed shock that a family member who also happened to be a primary care provider was not familiar with filling out a POLST (physician’s order for life-sustaining treatment).
These examples did not surprise me. I had no specific training in hospice or palliative care during my medical training. Ironically, it is the field in which I now specialize. Today, palliative care is a growing subspecialty; yet, we face the challenge of limited numbers of specialty trained, certified experts, in the face of increasing demand for our services. One of our team nurses shared that her only training on caring for the dying involved a lecture from a funeral home manager. There is insufficient training and poor understanding of our services among healthcare professionals, administrators, and the public.
We need to better prepare new trainees, as well as our established colleagues, in caring for those at the end of life. Death literacy describes the practical understanding and comfort with preparing for death. Instead of maintaining the persistent taboo around dying, death literacy enables people to learn about treatment approaches, including hospice and palliative care, develop the skills to discuss options, and build support systems to care for people approaching the end of life.
Our current healthcare system remains focused on disease specific treatment. Care is often fragmented and burdensome, lacking a focus on the whole person, their individual goals, and quality of life considerations. Palliative care offers specialized care at any age, for any stage of serious and chronic illness. The emphasis is on whole person care, addressing the symptoms and the stress of illness. It includes serious illness dialogues, sharing of prognosis, and exploration of quality of life considerations. Palliative specialty services are provided by an interdisciplinary team of trained experts including physicians, nurses, social workers, and chaplains who focus on multiple domains of care, starting with the physical status, and expanding to psychological, social, spiritual, and cultural issues. Palliative care supports patients who may continue curative treatments such as chemotherapy, radiation, or surgery.
Current recommendations are to introduce palliative care early in the course of serious illness, such as with a new diagnosis of metastatic cancer. It is preferable for healthcare providers to initiate dialogues before a crisis arises.
Hospice care is palliative care for patients with a terminal diagnosis. The hospice treatment focus is on symptom management to allow for a natural death. The place of care is usually in the home, skilled nursing facility, or assisted living facility, although larger urban areas are more likely to have a dedicated hospice facility. In the hospice model, the family is trained to provide daily care and administer medications. Hospice care is appropriate when treatments are no longer effective, not tolerated well, and the patient wishes to avoid recurrent emergency department (ED) visits or hospitalizations.
One approach to expanding palliative care access is by training more staff from all areas of healthcare in primary palliative care skills, such as addressing code status and goals of care discussions, symptom management, and recognition and treatment of the dying. These skills should be taught to all clinicians who work with seriously ill populations.
Few physicians have had formal training in sharing bad news or leading difficult conversations. Many of my colleagues express fear about the anticipated time constraints for these discussions, and the potential for strong emotions from patients and their loved ones. These struggles can add to clinician distress and burnout. But these special skills of knowing how to break bad news and manage goals of care discussions enhance the provider-patient relationship. With broader use of palliative care skills more patients will benefit.
For many clinicians, raising the topic of hospice care is challenging. They may fear destroying hope among their patients. As a result, many patients are referred late and do not benefit from all the services hospice can offer.
To avoid this, I start talking about hospice in advance — before patients need it. This serves to normalize hospice and prepare patients for potential transitions in care. I will say, “There may come a time when you do not want to return to the hospital or ED” or “You may find the treatments become a burden with too many side effects.”
When initiating dialogues, assess what the patient currently understands about the medical situation and ask what they want to know. Provide information and follow up again with a question to clarify their understanding. What we tell patients and what they hear can be very different. I aim to enter these discussions without an agenda; the goal is to provide the care they want for themselves. This may differ from what we would choose for ourselves.
Improving death literacy within our medical professions will improve care for those approaching the end of life. So much of our focus in medicine is on the latest, greatest treatment approach, but we need to recognize and honor those we cannot cure. They deserve expert care too. When people ask why I chose to specialize in this field, my response is simple: a good death is the last gift we can offer someone.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
Dr. Schroll advises that the goal is to provide the care patients want for themselves. Doctors should be reminded of a major meta-study of 36 research projects by healthcare professionals to define a “Good Death.” See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828197/ However, Dr. Dilip Jeste, the lead researcher, concluded “Just ask the patient.”
I’m a Death Doula who presents an educational primer for the dying process in an “expected” death such as from old age or chronic health conditions or disease. I have given the presentation to public groups but would not be opposed to giving it to nurses and other health care professionals to create an environment where the taboo is lifted.
At the ripe old age of 84 I appreciate Dr. Schroll’s comments because I am currently in the learning process of going gracefully when I face
death. Therefore, I think an article on palliative and hospice care would greatly benefit if their definitions were included. For instance, it is
my understanding that palliative is best defined as treating a patient’s illness while keeping her or him as comfortable as possible with food and
liquids, whereas hospice is simply keeping them as comfortable as possible without treating the illness or providing any food, especially a
substantial amount of liquids. If that is correct then family members, friends, etc. should be told not to personally provide liquids or allow
well-meaning, uneducated care-givers to provide liquids, thus unknowingly extending the suffering of their loved one and everyone else.
Unfortunately, I am learning that some nursing home employees and health-care professionals do not know the difference between palliative
and hospice care.
Not necessarily true. When my late husband was on hospice care, he was offered food and liquids and sometimes ate and drank. He could even have IV fluids; my late father did and so did he. Another myth about hospice is that patients can still take their current medications for things like hypertension, high cholesterol, and diabetes. There probably won’t be new medications ordered, though, except to relieve pain or anxiety. It’s even possible to remove a person for a day to seek medical care from a health care provider and then put the the patient back on hospice the next day. My late husband’s hospice chaplain said most hospices allow this. I did this for my late husband. His nursing home provided transportation to a doctor as a follow-up to his last hospital stay. A number of people on hospice outlive their 6-month prognosis and get it renewed. This happened to a friend’s 90+ year old father. He then improved to the point where he went off hospice care for another year and then needed it again. Hospice is not always a death sentence.