Palliative Care, Hospice, and the End of Life Option Act

Posted By Donna Alvarado, Medical Editor

Presented by
Grant M. Smith, MD, Clinical Assistant Professor of Medicine
Primary Care and Population Health

October 10, 2019

Many people have heard of palliative care, but they may not understand it. It is health care given to improve the quality of life for people living with a serious illness.

Some of us – even some doctors – confuse it as being only hospice or end-of-life care. It’s much more than that.

Palliative care’s mission is to provide relief from the symptoms and stress of illness. It can help people regardless of how long they expect to live.

“Palliative care and hospice are not synonyms,” said Grant M. Smith, MD, in a recent presentation at the Stanford Health Library. “They mean very different things.”

Combined with treatment

A patient getting palliative care for a serious illness may also be getting treatment to cure their disease or at least prolong their life. The patient can be young, old, or middle-aged.

“It is appropriate at any age, at any point in a serious illness, and can be delivered with curative treatment,” said Dr. Smith, who is a specialist at the Stanford Palliative Care program. “The goal is to improve quality of life for both the patient and the family.”

How does palliative care work? It’s health care delivered by a specially trained team who deliver an extra layer of care on top of patient’s other doctor(s). A cancer patient may be getting chemotherapy at the same time they are getting palliative care.

“In our clinic, we typically talk about pain, shortness of breath, nausea, constipation, anxiety, depression, coping with an illness, coping with a new diagnosis, and the stresses that come along with that,” Dr. Smith said. Other topics include appetite, weight loss, and the nerve-like pain called neuropathy.

Weighing trade-offs

Sometimes, there are trade-offs to pursuing treatments to save or prolong a patient’s life. Chemotherapy or radiation therapy can be uncomfortable or make a patient sicker than the disease itself. A palliative care team can help patients decide if they want to get the treatment and, if so, how to lessen any discomfort or pain.

“Palliative care doctors and providers are really good at wading through the water with you,” Dr. Smith said. “Walking along side you with those questions.”

Palliative care is based on the attitude that a person is more than their diagnosis. “I think of a person living with cancer, not a cancer patient,” Dr. Smith said.

He tells people who come to his clinic, “I want to hear about anything that is bothering you.” Often that is finding ways to relieve pain or other symptoms of their illness. But it varies from one person to another.

What matters most

“We recognize that everyone is individual in what they view quality of life to be,” Dr. Smith said. Some people say, “You know what is most important to me? It is living absolutely as long as possible. I just want to be on this Earth as long as possible.”

Some say being free of pain is what matters most to them. “Other people are more specific: They want to see their grandkids, they want to eat a hamburger, they want to watch Netflix.”

Ultimately, palliative care specialists want to help support whatever goals, priorities, or values are most important to patients and their loved ones.

Caregivers and family

Palliative care teams also support the families and caregivers of patients living with a serious illness. While other doctors may do that as well, the palliative care team is set up to provide the space, time, and staffing to do that, Dr. Smith said.

“We know when you’re living with a serious illness, there are physiologic or physical symptoms, psychological symptoms, social issues, and spiritual issues that can come up.” Because of this, palliative care generally operates as a team at Stanford. “When I see a new patient, my social worker and my chaplain [can] come in with me,” Dr. Smith said.

Palliative care can start right after a person gets a new diagnosis. It is available throughout the course of an illness and to people who have been cured of their underlying illness, but may have residual symptoms from treatment or the effects of the illness.

Early care helps

Getting palliative care early after a diagnosis is often the best time. A landmark study in 2010 found that people getting treatment for advanced lung cancer lived longer if they had palliative care alongside their standard cancer treatment than if they did not.

Palliative care has consistently shown benefits in many ways:

  • Improved quality of life
  • Improvement in symptoms, including less pain, nausea, and breathing problems
  • Spiritual well-being
  • Improved psychological symptoms
  • More satisfaction with overall care

Hospice

Although palliative care covers a broad range of services, it can also be coordinated with hospice care. In general, hospice care is focused on making sure people who aren’t expected to live more than 6 months longer are comfortable and have a quality of life as good as possible.

Hospice’s mission is to ask — for each patient — whether each part of their health care is going to make them more comfortable in this moment. If a medicine, procedure, lab test, or treatment is not helping to promote the comfort of a patient, hospice will say: ‘We shouldn’t do that,’ “ Dr. Smith said.

“It’s a good fit for patients who would say, “At this point in my life, given what’s going on, I want to focus on comfort. That is the most important thing to me.”

The cost of hospice is covered by Medicare and Medicaid, as well as most other insurance plans. There are regulations that hospice must follow:

  • A physician must certify that the patient has 6 months or less to live.
  • Hospice typically doesn’t cover the cost of cancer-directed treatments like chemotherapy or immunotherapy.

Hospice at home

Many people think that hospice is a place where patients must stay. That’s not the case, Dr. Smith said.

“Hospice can be delivered wherever patients are,” he said. “For many patients, they want to be at home. That is their ideal setting.”

Typically, hospice care is delivered by a team that may include a doctor, a nurse case manager, a social worker, a chaplain, and sometimes, a home health aide.

“Most of hospice is delivered in your home,” Dr. Smith said.

Hospice agencies

While hospice care is coordinated with palliative care, hospice is provided by a separate agency that’s not part of Stanford Health Care. Some of the main hospice agencies in the Bay Area are Mission Hospice, Pathways, Vitas, and Hospice by the Bay.

Planning for the end of life
A key part of palliative care services is helping a patient with serious illness plan for their future. Dr. Smith recommended that every patient, young or old, make a plan that guides what kind of medical treatment they would want if they are too sick or injured to choose for themselves at that time.

An “advance directive” is the name of a standard document that describes your wishes.
Filling out the document can be specific or general, depending on the individual’s choice.

The document can guide your family or loved one if it answers the question, for example, “If I were only able to be alive dependent on a breathing machine, would that be something I would want?” Dr. Smith said.

Another good step to take is to name the person who would carry out your wishes for medical treatment if you are too sick to choose yourself. The form that names this person is often called “Durable Power of Attorney.”

“I really, really believe so strongly that everyone should have that,” Dr. Smith said. “It is the gift that you give your family members. Enacting it for you is the gift they give back.

End of Life Option Act

For people who are expected to live 6 months or less, there is another option they can consider under a California state law called the End of Life Option Act. This law allows patients to ask a doctor to prescribe a lethal dose of medicine that the patient can take to end their life.

This option is available only if a patient meets these eligibility requirements:

  • The patient must be diagnosed with an incurable disease that is expected to cause their death within 6 months.
  • The patient must have the ability to make medical decisions themselves.
  • The patient must be able to take the medicine themselves.

This option is a choice that’s legal in California and several other states including Oregon, Washington, Montana, New Mexico, Colorado, Hawaii, Vermont, New Jersey, and Washington DC.

Formal request

A patient who is interested in the End of Life Option Act must make a formal request in person to their doctor as well as submit a written request that is notarized or witnessed by 2 others. The patient must repeat the request to the prescribing doctor no earlier than 15 days later. The prescribing doctor must confirm the patient’s diagnosis, prognosis, and ability to make their own decisions.

In practice, some patients may talk to their doctor about this option, and then decide not to pursue it.

“We often see people who are thinking about it, and it’s on their minds,” Dr. Smith said. “Many of these requests are openings to conversations that don’t always end up to someone participating in the End of Life Option Act.”

“We still honor and respect patients who want to move forward with this process,” Dr. Smith said. “We just like to also do our best to pursue quality of life issues, regardless of what that patient ultimately ends up doing.”

For more information:

Grant M. Smith, MD

Stanford Palliative Care

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