Taken from page 10 of the January/February 2019 Newsletter
By Adriane Fugh-Berman, MD and Charlea T. Massion, MD
An 83-year- old woman dies on a ventilator in the ICU. She’s been hospitalized for five of the last six months of her life.
A 57-year-old woman with recurrent metastatic breast cancer develops cancer-related fluid inside her chest cavity. She has aggressive surgery to prevent the fluid from reaccumulating. She dies in the hospital two days later.
Perhaps you’ve witnessed similar situations. In our high-tech healthcare system, aggressive treatment is the standard approach. Sometimes it is tremendously beneficial. However, in other circumstances, aggressive treatment causes a patient and their family great suffering with little benefit.
Why do we inflict drastic procedures and treatments on people who are dying? Because we can then say we did everything we could? Unfortunately “everything we could” often sacrifices the patient’s comfort for futile hopes. Even worse, surgeries, chemotherapy, etc. can weaken or disable someone who is dying. Focusing on disease treatment also precludes optimum management of end-of-life symptoms (pain, nausea, anxiety, insomnia, etc.) and absorbs precious time better spent with loved ones and settling one’s affairs.
Aggressive treatment also often prevents someone from being home, which is where most Americans hope to die—but don’t.
Charlea is a hospice and palliative care physician who sees these situations all too frequently. Choosing hospice or palliative care isn’t “giving up”—it’s supporting exploration of ALL options, not just what aggressive intervention to try next. As feminists, we must empower ourselves and our loved ones with knowledge about hospice and palliative care. Learning about palliative care and end-of-life care is just as crucial as a pregnant woman learning about childbirth and developing a birth plan. It is essential to advocate for what you want, either with or without your physician’s approval.
Here are the basics of hospice and palliative care:
Palliative care is usually for someone with an estimated one to two years to live. Patients who receive palliative care services can continue to pursue interventions like surgery or diagnostic tests. Palliative care physicians are specialists who help patients with complex symptoms, including pain, nausea, anxiety, and/or insomnia. These physicians also facilitate “goals of care” discussions with patients and families about continuing aggressive care or shifting to “comfort goals” and focusing solely on quality of life.
Palliative care versus hospice care
Hospice services are reserved for people with an estimated six months or less to live, and focus on comfort and quality of life. When someone starts hospice care, they stop pursuing curative treatments and interventions to prolong life (e.g., dialysis, surgery, chemotherapy, radiation, etc.). Hospice patients usually receive care where they live: home, assisted living, nursing homes, or homeless shelters. Hospice patients with symptoms that cannot be well-managed where they reside receive care in a hospital or inpatient hospice facility.
Advance Care Planning
In previous columns, we‘ve covered “advance care planning” documents you can use to guide end-of-life care (see www.nwhn.org/dying-america-better-ever/ and www.nwhn.org/be-your-own-death-panel/). These direct your physicians to provide the care you want in a life-limiting illness—and, even more important, the interventions you do NOT want. Hospice and palliative care physicians, nurses, and social workers can assist patients and families with advance directives, Five Wishes, and Physician Orders for Life-Sustaining Treatments (POLSTs). Although these all are legal documents in most states, we urge you to check your state’s legal requirements.
“Code status” indicates if you want cardiopulmonary resuscitation (CPR) if your heart or breathing stops. It also states if you want defibrillation (shocking the heart) and/or “intubation” (inserting a breathing tube for life support on a ventilator). Both hospice and palliative care providers can help you determine your code status, communicate your choice to your physicians, and document your code status in electronic health records. It is important to note: Although CPR often appears easy and successful on TV, it’s actually a very traumatic procedure that causes bruising, rib fractures, liver lacerations, and other injuries. For someone with multiple chronic illnesses, advanced cancer, severe heart or lung disease, or end-stage kidney or liver disease, CPR is almost always unsuccessful. Even if someone is resuscitated, they are at risk for brain injuries, often have another cardiac arrest within a day, rarely leave the hospital alive, and are unlikely to ever regain their previous level of function.
Palliative care at home or in the hospital
Inpatient palliative care (provided in the hospital) is available in most major hospitals and increasingly in smaller community hospitals as well. Outpatient palliative care (outside the hospital) is often provided by a team of physicians, nurses, social workers and/or mid-level providers (nurse practitioners and physician assistants). This team can also help with symptom management; ongoing review of treatment goals as someone’s health changes; and “care coordination,” which facilitates communication among all the providers involved in caring for someone with life-limiting illness.
Finding hospice providers in your community
We encourage you to choose non-profit, community-based hospices. Consider asking your family, friends, and neighbors for recommendations. Many communities have several hospices and there may be significant differences in the quality of care provided. Avoid for-profit hospices. During the last 15 years, the major growth in the “hospice industry” has been in for-profit hospices, which are corporations with hospice chains across many states and with different incentives than nonprofit community hospices.
Finding palliative care providers in your community
If you or a loved one is hospitalized, ask your hospital physician for a palliative care consultation or ask the staff to contact the hospital’s palliative care service. In many places, outpatient palliative care options are limited, and you may need to look more diligently. Ask your friends, family, neighbors, and your health care providers for recommendations of palliative care practices in your area. Your insurance plan also may have information on local palliative care services.
Adriane Fugh-Berman, MD, is a professor in the Georgetown University Medical Center (GUMC), and director of PharmedOut, a GUMC project that promotes rational prescribing.
Charlea T. Massion, MD, is a family physician and specialist in hospice and palliative care medicine. She is the Chief Medical Director of Hospice of Santa Cruz County and also teaches physicians about worklife balance and career development.