Effect of a Patient and Clinician Communication-Priming Intervention on Patient-Reported Goals-of-Care Discussions Between Patients With Serious Illness and Clinicians: A Randomized Clinical Trial

What are Goals of Care, and Who Needs Them?

When you are faced with a chronic or challenging medical condition, there are all sorts of decisions that you have to make with your health care team to make sure that the care you receive fits your wishes. Anyone living with a medical condition can benefit from a conversation about Goals of Care.

What are Goals of Care?

Goals of Care are the values and intentions that a patient has for their health care, now and in the future, including where you receive care.

Many people associate the idea of Goals of care with the end of life. While they are important for people approaching the end of life, there are many different tools that can help individuals achieve their goals of care, no matter where they are in their care journey. It is helpful to know some key types of care:

Traditional care: The purpose of traditional care is to cure or rehabilitate someone from a disease, injury, or condition or its symptoms. This could be considered getting someone “back to baseline” from before an illness or injury.

Palliative care: The purpose of palliative care is to improve relief and quality of life for people with a serious, progressive illness. This illness might or might not limit your expected life span. Palliative care can be provided at the same time as traditional care and is separate and different from hospice care. Palliative care support may be helpful during some parts of a person’s healthcare journey.

Hospice care: The purpose of hospice care is to bring comfort and relief to people with a life-limiting illness who have chosen to stop treatments or have no treatments available. Though often associated with imminent death, the focus is on the quality of life that someone and their loved ones desire in the days, weeks, or months preceding death. It is typically available when someone is estimated to have six months or less left to live, but many people continue to receive care longer than this time after qualifying.

Comfort care: Comfort care is a component of hospice care that focuses on quality of life. With comfort care, the person reduces the intensity of medical care because the burden outweighs the benefits.

Additional relevant terms:

Advanced Care Planning (ACP): Advanced care planning is the process of discussing and preparing for future medical care decisions in case you become seriously ill or unable to communicate your wishes. While ACP can be helpful towards the end of life, it can also be quite valuable to anyone who suffers from bouts of severe cognitive impairment, such as those living with hepatic encephalopathy (HE), to guide decisions when needed.

Advanced Directive: Part of ACP, an advanced directive is a legal document that provides instructions for medical care for situations in which you cannot communicate your own wishes. The most common are living wills (spell out your wishes and treatments you would and would not want) and durable power of attorney for health care (naming an individual, called healthcare agent, proxy, surrogate, etc, to make health care decisions for you when you are unable to do so).

Many of these tools can be quite valuable to people of all ages and stages. Individuals with many chronic diseases can benefit from palliative care while seeking curative treatment, and ACP can support decisions both at the end of life and in unexpected emergencies.

What might be covered in a Goals of Care conversation?

Many factors might affect your Goals of Care. These include:

Your personal values
Cultural influences
Major life events or other goals you would like to experience or enjoy
Prognosis, or the likely course, of your disease and condition
Your personal priorities
Sources of emotional support

Each person is different. The same prognosis may result in quite different goals, depending on the individual. Your goals will help your care team determine a treatment plan to achieve those goals.

Why are Goals of Care important?

It can be upsetting to think about end of life or difficult health care decisions. However, it is easier to think about the care you want to receive and the experiences you want to prioritize when you have the opportunity, and before they may become dire. This can also be helpful to loved ones in future stressful moments.

Articulating your Goals of Care can help you ensure that your experience of health care aligns with your desires. Studies have shown that a conversation about Goals of Care does indeed improve the concordance between the goal and the care itself. This means a more positive experience of care, stronger and more effective communication, and an honoring of your personal priorities.

Your goals of care will directly affect the intensity of the treatment you receive. Your treatment plan affects not only your future but also your day-to-day feelings and presence.

Ultimately, people who have an intentional discussion about Goals of Care with their doctor achieve higher overall well-being and satisfaction with their care, worthy outcomes of their own merit. These discussions can help you from finding yourself in the situation that “you never wanted.”

Who should be having conversations about Goals of Care?

Those approaching the end of life, if they are able, should try to have a comprehensive conversation about their Goals of Care with their loved ones and key members of their health care team. However, these conversations are just as important for people with a chronic or challenging medical condition. Even if you have many more years to live, you likely have very impactful decisions to make about your health care.

You don’t have to make decisions about Goals of Care alone. A spouse or partner, sibling, faith leader, and members of your health care team can all provide input and insight as you make difficult decisions. Caregivers and close loved ones, especially in the cases where a patient is unable (or sometimes unable) to make decisions for themselves, should also be involved.

How do you start a conversation about Goals of Care?

Start by telling your main health care provider, who is coordinating your care, whether that is your primary care physician, nurse, or hepatologist, that you’d like to have a meeting about Goals of Care. Make sure everyone you want involved can attend the meeting, and be sure to bring a trusted friend or family member to help advocate for you.

As you prepare, take some time to think about what’s important to you and write it down. Share it with your trusted advocate before the meeting. This will help you enter the conversation clear on your priorities as you discuss each decision that must be made for your future.

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Remember, your health care team has convened to serve you, and decisions about your medical care should be aligned with your personal values and priorities. Having a conversation about Goals of Care can make sure you are at the center of your medical decision-making — where you belong. It is never too early to start the conversation.

The statements and opinions presented in this blog post are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or the Methodology Committee.