Hospice Care Must Be a Choice Everyone Can Access
Not all hospice providers offer the same benefits, so it's up to doctors and families to advocate for the patient nearing end of life
Editor’s note: This article was provided through The OpEd Project, whose mission is to increase the range of voices and quality of ideas we hear in the world.
"Please let me go home with my family."
Those were the words of a 65-year-old patient who was begging us, his palliative medicine team, to discharge him. (Palliative care provides relief from the stress and symptoms of a serious illness.) We were consulted by the intensive care unit doctors to see this patient after he was admitted through the emergency room a few days earlier due to shortness of breath.
He needed high amounts of oxygen, which required admission to the intensive care unit. He was all by himself in his room due to visitor restrictions.
Four months ago, this man was diagnosed with colon cancer which had spread throughout his body, including his lungs. He tried multiple different treatments such as chemotherapy and radiation, but the cancer continued to grow.
"I don't want to try any more chemotherapy. I just want to go home."
His only other history of medical illness was a kidney disease called Focal Segmental Glomerulosclerosis (FSGS), which caused his kidneys to fail and required him to be on dialysis for the past five years.
"My stomach hurts and I'm short of breath," he said. "I don't want to try any more chemotherapy. I just want to go home."
This patient's preferences for medical care, to go home and be with his family as he nears the end of his life, aligns with the hospice philosophy of care which promotes quality of life and patient comfort.
The Origins of Hospice
Created in 1986, the hospice benefit is covered by Medicare and Medicaid and many private insurers. Patients with hospice can receive visits from nurses, home health aides, social workers, chaplains, physical therapists and physicians who work together to provide holistic medical care wherever the patient is located. It can be offered at home and in a long-term care setting.
Inpatient hospice is an option for patients with symptom-needs that cannot be controlled at home or in a nursing facility. That kind of care often occurs in a hospital setting. Once patient symptoms are controlled, patients will be discharged, with continued care by the hospice agency.
Hospice also allows patients to receive medical treatment, including prescription drugs and access to medical equipment such as oxygen.
To quality for hospice, which is associated with improved outcomes such as patient satisfaction and pain control, patients must have a prognosis of six months or less to live.
The patient I wrote about at the beginning of this article met that criterion.
Besides serious staffing shortages, another challenge with hospice is that the care provided to patients may vary from agency to agency and state to state.
As a hospice and palliative medicine physician who was treating this patient with terminal cancer, I recommended that he and his family consider hospice care.
However, obtaining hospice care for this patient and the rising number of patients who may be needing or wanting hospice care may be an issue.
U.S. deaths related to COVID-19 are again rising. Even without the COVID-19 pandemic, hospice staffing shortages remain a problem and are not expected to improve anytime soon.
Besides serious staffing shortages, another challenge with hospice is that the care provided to patients may vary from agency to agency and state to state. More than 4,000 hospice agencies exist throughout the country, yet they may offer different services, such as whether they will continue care with dialysis or not.
For patients 21 and older, hospice does not allow for curative treatment for a patient's terminal condition, but patients can receive treatment for other medical conditions.
In certain geographic locations, it can be difficult to find a hospice agency that would consider continuing dialysis in this patient.
For the patient in this case — with terminal cancer and unrelated kidney failure — for the Medicare hospice benefit, he should be able to receive care for kidney failure and continue his dialysis.
In certain geographic locations, such as Chicago, however, it can be difficult to find a hospice agency that would consider continuing dialysis in this patient, even though it is supported by the hospice benefit.
Why Is This the Case?
It's likely related, in part, to the low reimbursement rates hospice agencies can provide to dialysis centers. Hospice agencies only receive a set amount of funding per patient, per day, which for routine home care was less than $200 per day during 2020.
Continued care with dialysis has the potential to improve this patient's breathing discomfort and extend his life, giving him the chance to spend more time with his family. Without dialysis, he may only live for about one week.
And that is what hospice is supposed to do: maximize quality of life at the end of life. Finding the right hospice is critical for each patient. Decisions regarding which agency to choose has the potential to significantly alter the life expectancy of these patients.
Differences in care provided to patients at the end of life may also be related to limited frontline clinician understanding about treatment options that can be provided with hospice.
For example, I have seen clinicians withhold all antibiotics because it was assumed patients choosing hospice care cannot receive them.
Worse yet, I have seen clinicians recommend turning off a patient's pacemaker because they believed the pacemaker could not continue with hospice. In this situation, this would have significantly shortened the patient's life expectancy, which was not in line with the patient's preferences for care.
To be sure, not all patients receiving hospice care want their life extended with medical treatments like antibiotics or dialysis. However, a decision like this is theirs to make and should not be made for them by hospice agencies or clinicians who did not receive adequate training about hospice care.
A Voice for the Voiceless
How can family members, advocates and health care workers improve this situation?
Health care providers can advocate for patients and families to receive referrals from multiple hospice agencies to find one that best aligns with their preferences for care.
It is also urgent to better educate frontline clinicians about hospice care by mandating training in hospice and palliative medicine during medical training. They should then be encouraged to seek assistance from hospice and palliative medicine experts when uncertain.
It is also necessary to investigate those hospice agencies that are not providing care recommended by the hospice benefit and restrict them from patient care if they choose not to provide the benefit the patient is entitled to receive.
It is essential for all of us — clinicians, patients and family members — to advocate for increased funding to aid hospice agencies so they can continue to provide patients with this care.
How long a patient lives with hospice should not depend on where they live, what agency they choose or the educational training of their medical team. All patients must be provided with the hospice care they deserve at the end of life.