The Importance of Advance Care Planning in Palliative Care

Advance care planning has been part of healthcare for many decades, yet a surprisingly small percentage of adults in the United States have advance directives in place. According to a meta-analysis from 2017, only about 1 in 3 US adults have an advance directive for end-of-life care documented.   

People will most commonly document these advance care planning discussions as advance directives, which are written and legal documents that capture important discussions about future healthcare. The most common types of advance directives are living wills and durable power of attorneys (POAs) for healthcare. There may also be additional forms that are dependent on state regulations that capture an individual’s wishes around artificial nutrition, CPR, blood transfusions and other life-sustaining treatments.      

Recently, advance care planning has gained increased interest in the field of healthcare, due to the many proven benefits of ensuring patients have an opportunity to participate in creating clear advance directives. Because advance care planning is a core element of palliative care, it is only natural that along with the rapid growth of palliative care, we are seeing a unique opportunity to highlight the importance of advance care planning as well, and to leverage it to support those with chronic or serious illness in seeking cost-effective care that meets their individual needs and improves outcomes. 

Palliative care’s unique role in supporting advance care planning 

Because palliative care supports those living with complex and chronic health concerns, it is uniquely positioned to help patients address goals for their care. Because the common advance directives do not capture all the important decisions that may need to be made when serious health conditions arise, it’s important for palliative care teams to attempt to discuss and document more comprehensive advance directives on all patients admitted to palliative care programs.  

This allows palliative care to create conversations patients might otherwise struggle with, because palliative care is dedicated to addressing advance care plans from a broad, holistic point of view. Advance care planning starts with recognition of the patient’s complex or serious illness, and naturally leans into discussions and preparation for future healthcare needs should one become seriously ill or unable to communicate wishes to their loved ones or designated healthcare decision-makers. 

Palliative care discussions can help address how to achieve the best quality of life and decreased symptom burden today, while helping patients and their families understand the future trajectory of their illness and guiding them through defining what kind of end-of-life care they want.  

Why is advance care planning important? 

Having these advance care planning discussions with family before a serious health event happens is key to helping prevent unnecessary medical procedures and escalations in care. This can decrease costs and ensure that more patients stay at home where they prefer to be. 

What do we know about patients’ preferences? Surveys like this one on end-of life medical care from the Kaiser Family Foundation (KFF), in partnership with The Economist, indicate a high number of people — in this case 71% — prefer to die at home. The same report noted that 49% of people consider it “extremely important” their wishes for medical care are followed, with an additional 36% saying it’s “very important.” 

In reality, according to a study from the New England Journal of Medicine, only around 30% of people die at home. More importantly, according to another New England Journal of Medicine study of 999 individuals that died between 2000 and 2006, only 38% of patients who had a living will or healthcare power of attorney (HCPOA) died in the hospital, compared with >50% of patients without either a living will or HCPOA. 

By following patients’ wishes, we also find that health care costs are often decreased. A study of advanced cancer patients at the end of life found that for those patients who had end-of-life discussions well before end of life (average 6 months) had a 36% lower total cost of care in the final week of life and reported a higher quality of life than patients who had not done advance care planning.  

This can be attributed to several factors. Having advance care planning conversations means that patients have an opportunity to choose less invasive treatments and less aggressive interventions well before they are in a crisis that requires these decisions. With time to consider how those costly interventions might impact their end-of-life goals, such as choosing to die at home, patients often prefer comfort measures and quality of life over life-extending measures. In fact, this was also reflected in the KFF survey, with 78% of respondents indicating it was either very important or extremely important to them to be comfortable and without pain at the end of life, and 46% concluding that living as long as possible held the same importance. 

The benefits of advance care planning in these situations are well-illustrated. For example, in a study of advanced cancer patients and their caregivers, having end-of-life discussions were associated with lower rates of ventilation, ICU admission and earlier enrollment in hospice. For caregivers, they experienced better quality of life when patients enrolled in hospice and received less aggressive medical care at the end of life.  

How does Palliative Care at Home address advance care planning? 

As noted above, one key factor in allowing patients to fulfill their end-of-life wishes is a comprehensive and proactive approach to advance care planning. We believe that having these discussions in the home, during a time when individuals are not in a medical crisis, is the best way to capture the clearest picture of what a person’s wishes are for medical care as their health declines.   

In our Palliative Care at Home programs, nurse practitioners, nurses and social workers are starting these discussions during the first visit and are documenting an advance care plan in 90% of cases within 60 days of admission to our program, far above the national average.    

While patients should take steps to obtain a living will and healthcare power of attorney, our clinical teams use a variety of tools to help patients determine care options. These include portable orders for life-sustaining treatment (POLST), the Five Wishes tool and other available resources. This enables our providers to have discussions with patients about the full spectrum of end-of-life care.  

We prioritize these discussions with both patients and caregivers (with patient consent), because we understand that the best advance care planning discussions involve the extended family unit. Our team revisits these discussions as we develop rapport with patients and caregivers and as their clinical status changes. Healthcare planning decisions are often made at a point in time, and it is important to constantly refresh these discussions as patients’ medical conditions progress to capture changes in wishes for advanced care at the end-of-life.  

By using a multi-disciplinary team approach to care discussions goals, our Palliative Care at Home providers document advance care plans and involve patients and caregivers in the process. Through this proactive approach in the home, we can create tremendous value for patients, caregivers, the extended healthcare team and payers by improving quality of life, decreasing unnecessary and unwanted medical care and allowing for goal-directed health care. 

The intersection of advance care planning and palliative care 

As we’ve illustrated here, advance care planning holds unique value for not only ensuring patients’ wishes are honored, but also decreasing unnecessary care and costs. By bringing palliative care home as a value-based approach to improving healthcare, we’re giving patients, providers and payers the opportunity to elevate care for those living with chronic and complex illness.