How can palliative medicine help with end-of-life decisions?

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December 18, 2018

doctor and nurse talking to elderly male patient and his wife

You’ve likely heard the terms “palliative care” and “hospice care,” but may not understand how they can help patients and their families who are experiencing advanced disease and serious medical questions.

The goal of the Palliative Medicine team is to enhance a patient's quality of life by maximizing physical comfort, preventing or alleviating suffering, and providing psychological and spiritual support.

According to the National Institute on Aging, anyone living with a serious disease such as heart failure, chronic obstructive pulmonary disease, cancer, dementia, Parkinson's and many others can benefit from this care. Palliative care can be helpful at any stage of illness, and can be provided along with curative treatment.

A few years ago, I co-authored a paper published in the journal of Anesthesia and Analgesia that stated that only 45 percent of patients actually recognize they’re dying, and more than half of patients aren’t aware of the gravity of the situation. If they were, they might choose other options.

“Recognition of the dying process allows for development of a plan to alleviate symptoms, facilitation of patient discussions with family members regarding wishes and preferences, implementation of advanced directives, and transition to palliative and comfort care,” our research team wrote.

What is palliative care?

This care focuses on providing relief from the symptoms and stress of a serious illness, with the goal of improving quality of life for both the patient and the family.

At Ohio State’s Wexner Medical Center, our team includes physicians, advance practice nurses, fellows, pharmacists, psychologists, social workers and chaplains.

Our Palliative Medicine team members meet frequently with primary treatment teams, social workers, primary care services, nurse practitioners and patient care resource manager. They also offer outpatient services, particularly for cancer and heart failure patients who have complex pain and symptom management issues or palliative care needs.

Palliative Care team services can include:

Expert treatment of your pain and other symptoms
Help navigating the healthcare system
Guidance with difficult and complex treatment choices
Detailed practical information and assistance
Emotional and spiritual support for you and your family

A key component is helping patients with complex illnesses to manage their symptoms, which may include suffering from pain, insomnia, anxiety or grief.

Our goal is to support patient-provider communication and make sure that the patient’s values, goals and preferences are guiding and directing their care plan. This will be different for each individual patient, based on their preferences and treatment options.

What is hospice care?

Like palliative care, hospice provides comprehensive comfort care as well as support for the family. Hospice care is provided for a person with a terminal illness whose doctor believes they have six months or less to live, if the illness runs its natural course.

There is a distinction between palliative care and palliative care provided in hospice care. Palliative care can be provided alongside life-prolonging treatments and surgeries and life support, such as feeding tubes and ventilators.

But when a patient has exhausted all disease-directed therapies, or has chosen not to use any disease-directed therapies, then hospice is the next step. With hospice, palliative care is still offered to keep the patient comfortable, but attempts to cure the person's illness are stopped.

To best meet the end-of-life needs of patients, Ohio State Wexner Medical Center is creating a new 12-bed inpatient hospice unit at University Hospital that will open in January.

The new hospice service will provide end-of-life care to patients from all of our hospitals and will include pain management and symptom control, spiritual support, bereavement support and support groups.

How can you plan for end-of-life decisions?

It’s never too early to start thinking about end-of-life decisions. It’s important for you to find someone who’ll be your “surrogate” and can speak your voice and your mind if you’re not able to communicate your healthcare decisions.

You should discuss your end-of-life wishes with your surrogate and make sure your surrogate clearly understands your wishes. Your surrogate can be a spouse, sibling or other family member or even a friend or colleague.

Equally important is making sure that your surrogate has the legal document called a “Health care Power of Attorney” that gives them the power to make healthcare decisions for you.

What are some questions to consider?

The palliative care team can help guide this discussion to learn more about the patient’s values, goals and preferences, which can help clarify these end-of-life decisions.

You should have an educated conversation with your surrogate about how you feel at that time of your life, and then keep that conversation going, as your wishes may change over time.

Case in point: A new study by Yale researchers published in the journal JAMA Internal Medicine found that, while 75 percent of surrogates felt extremely confident in their knowledge of a loved one’s preferences, only 21 percent of them actually knew what the older patient would want in the event of a serious illness.

We encourage our patients to think about their lives, and the things that are critical to them that make their life worth living. Answering these questions can help bring these end-of-life decisions into focus:

Which of your senses are most important to you? What are your essentials and what can you live without? Seeing? Hearing? Thinking? Communicating? Eating? Talking? Walking?
What if you could no longer bathe or dress yourself?
What if you could no longer live in your own home?
Would you move into an assisted living facility or nursing home? For how long?
What if you could no longer transfer yourself from your bed to chair, or safely use the toilet?
What if you couldn’t move, and required someone to re-position your body in bed every two hours so you didn’t develop bedsores?
What if you needed a ventilator or a feeding tube?

And then ask yourself, “How much of this could you tolerate and make this life still worth living?”

This answer will be different for each person. Most people can figure out what they want and what is most important to them, and then the palliative care team can work with them to provide the best quality of life possible.

Ellin Gafford is director of the Division of Palliative Medicine at The Ohio State University College of Medicine and medical director of Hospice Services at Ohio State’s Wexner Medical Center.

Adding your end-of-life plans to MyChart

Connecting your end-of-life plans with your online health portal, such as MyChart, is another important step in the process. Through MyChart, accessible via the Ohio State MyHealth app, patients can add Advanced Care Planning documents, change contact information for family and friends they've designated to assist with care decisions and learn about local resources available to assist with these decisions.