BY Rebecca Burke, MD, FAAFP, Village Medical
Hospice and Palliative medicine are team-based medical specialties providing comprehensive treatment of physical, emotional, cultural, and spiritual needs related to serious illness or injury. The goal is to reduce suffering and improve the quality of life for both patients and families. Hospice care is specifically reserved for patients with a life expectancy of fewer than 6 months who no longer qualify or desire therapies of curative intent.
As a physician practicing both Family Medicine and Hospice and Palliative Medicine, I’m frequently asked, “how do you deal with your patients dying?”. The truth is, I see my patients long-term, develop close relationships with them and their families, and navigate the highs and lows of some of the most serious medical conditions with my patients. I love both my specialties because I have the opportunity to meet patients at birth, celebrate the remission of cancer or receipt of a transplant, and, when appropriate, keep patients comfortable as they transition to death. That is why I chose to utilize this platform to dispel a few common misconceptions about Hospice and Palliative Care.
Myth #1: If you’re referred to a Palliative doctor, it means you’re dying.
False. The fact is Palliative doctors see patients in all spectrums of their illness, from time of diagnosis to cure or up until death. For example, heart failure patients awaiting a heart transplant are required to obtain a Palliative medicine evaluation by The Joint Commission for a hospital to maintain Advanced Certification in Heart Failure (ACHF). Palliative providers see patients with non-terminal illnesses, such as multiple sclerosis or highly treatable lymphomas, to provide aggressive symptom management during and after treatment to help improve their quality of life. In fact, Palliative care extends lives. In a study of 151 patients with non-small cell lung cancer introduced to palliative care at diagnosis, patients ultimately ended up receiving less aggressive care at the end of life but longer survival.1
Additionally, palliative providers are often one of the few specialists registered to prescribe medical marijuana in states where it is legal, providing treatment of complex pain, appetite loss, insomnia, and neuropathy, to name a few. I once successfully treated a dementia patient with severe agitation who was unresponsive to several antipsychotics with medical marijuana. His disposition changed overnight, and the family was immensely grateful knowing their loved one was no longer suffering.
Myth #2: To qualify for hospice, you must agree to Do Not Resuscitate.
False. Hospice is reserved for any patient with a terminal illness and life expectancy of 6 months or less no longer seeking or qualifying for curative therapies. That is the only requirement that needs to be met for hospice care. The patient can be full code and sign onto hospice. It is their personal choice.
Myth #3: Patients in hospice cannot receive life-prolonging interventions.
The goal of hospice is to alleviate discomfort, not shorten lives. Patients with metastatic cancers that have not responded to traditional treatment are oftentimes offered palliative chemotherapy and/or radiation to alleviate symptoms associated with tumor burden, pain specifically. The life expectancy of the patient remains unchanged most times, usually still less than six months. Therefore the patient will continue to qualify for the benefits of hospice. Unfortunately, since hospice is paid on a per diem basis, the more expensive the procedure or treatment is, the less likely a hospice company is to cover this.
Another prime example is blood transfusions. Patients with bone marrow disorders who suffer from chronic anemia benefit drastically from blood transfusions. My own grandmother developed myelodysplastic syndrome in her later years. I watched her transition from a short of breath, pale, frail woman to a vibrant, energetic, proud grandmother spoiling her great-grandchildren after receiving blood transfusions every few months. Again, since she continued to decline overall, she would continue to qualify for hospice care.
Last but not least, consider the patient with dementia, no longer able to maintain adequate nutrition but still able to engage with family and enjoy life. In comes the option of a feeding tube. Although feeding tubes are not recommended in patients with end-stage dementia, they are still routinely offered to families uncomfortable watching their loved ones become more malnourished over time. Patients with end-stage dementia (bed-bound, incontinent, only speak a few words) qualify for hospice care, and families greatly benefit from this extra support. Feeding tubes are permitted under hospice care and
Myth #4: Patients in hospice cannot be hospitalized.
Although hospice can provide around-the-clock care at home for highly symptomatic patients through a benefit called crisis care, there are scenarios where the escalation of care is needed. Inpatient hospice care serves to directly admit patients into a hospital to manage symptoms more aggressively. Patients remain in hospice and are usually admitted to a hospice unit. If a patient is admitted to the hospital for a more emergent treatment, such as a bowel obstruction in a patient with metastatic cancer, the patient may sign off hospice, obtain lifesaving treatment, and upon discharge from the hospital, resume hospice care. In short, just because a patient is on hospice does not mean they are ever withheld appropriate care.
These are a few of the top questions I encounter when referring patients to the hospice. My hope is that this article provided some clarity to assumptions commonly made by patients and providers reluctant to refer to Palliative or Hospice. Hospice companies will provide informational visits at the home of patients to answer questions and discuss services in more detail without any obligation. Keep this in mind as an option when a patient is hesitant about initiating hospice care but truly would benefit from services.
Sources:
- Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.