Palliative Care is different from hospice, comfort care and DNR status: Palliative care (care where Advance Care Planning takes place) is an ongoing conversation in the context of a trusting relationship over time. This is the essence of true Primary Care. It is patient-centered, and brings all the skills of the health care provider to bear: clinical expertise, judgment and experience; compassion; difficult, emotional conversations with the entire family.
Lael Duncan’s brief but engaging description of Advance Care Planning (below) was published in Marin Medicine (Fall 2011 Volume 57, Number 4, pages: 16-19). Marin Medicine, incidentally, can be accessed online, and is the best County Medical Society Magazine I’ve come across.
While the Primary Care Clinician should be involved with advance care planning and follow patients over time, the recent trend to reliance on Hospitalists to care for our patients when they are sickest can break continuity with the outpatient health care provider who has been having advance care planning conversations over time.
In a new best practice, many hospitals have a “palliative care service” staffed by experts in advance care planning and experienced in helping patients and families define their wishes. This special service is especially valuable when a previously healthy patient with no deep connection to an outpatient primary care clinician is admitted with a catastrophic illness.
However, for patients with serious chronic medical conditions or advanced age, it is the primary care clinician who must take responsibility for initiating advance care planning, when the patient and family can process this information over time in the context of a long term relationship.
As you read Dr. Duncan’s article, think about how you can incorporate Advance Care Planning more systematically into your practice.
Robert Moore, MD, MPH
Advance Care Planning (Marin Medicine, Fall 2011)
By Lael Duncan, MD
Imagine a patient, let’s call her Anne, is diagnosed with her first episode of congestive heart failure and atrial fibrillation after a brief hospitalization. At the time of discharge, her hospitalist recommends she see her cardiologist and her family physician and also suggests she consult with a palliative care specialist for management and planning. Anne does all this and is surprised to find the palliative specialist is especially concerned with how she wants to live her life (not how sick she is), which symptoms she is most concerned about, and what her family and social life are like.
At their next visit one year later, Anne and her palliative specialist again discuss these matters and also talk about end-of-life scenarios. Anne is at first reluctant to “go there,” but later in the talk admits to him that she saw her father die in an ICU after weeks on the ventilator. She stares off as she quietly states, “He also had this heart condition. … My mom could not let him go. … It was all very difficult and painful.”
When I was in medical school, “comfort care” generally meant that a patient was only receiving medication that would provide comfort, that the patient was expected to die within days, that they were “on hospice.” Our focus was overwhelmingly to detect, diagnose and treat disease first and foremost. Only when pain or discomfort were on top of the problem list, when we had run out of diagnostic and treatment options, did we address pain and suffering with any degree of fervor and strategic planning.
We are now entering the era of patient-centered care, and we are engaging with increasingly empowered patients. Their voices are ringing ever more clearly as the financial crisis in healthcare looms and their individual needs remain unmet. Perhaps the provision of comfort (palliation of suffering, in all its forms) and care (treatment for disease) will be common in this new era. If we are fortunate, this combined approach will be a more cost-effective and will result in higher patient satisfaction, both early and late in illness.
Palliative physicians are those who care for patients with serious, life-limiting and often chronic illness. The focus of their care is the quality of life, but not to the exclusion of providing treatments aimed at increasing the quantity of life. Palliative care, mistakenly called by some “symptom management,” is a specialty with breadth and depth unto itself, just like any other medical specialty. In the same way that our ability to diagnose, intervene and manage disease has advanced dramatically in the last few decades, so too has the focus, ability and armamentarium of the palliative specialist.
The palliative specialist is trained to see the patient as a whole person, in their own individual context and logistical setting, and to tease out what matters most to them as their life and disease simultaneously progress. Palliative specialists are trained to think “outside the box” when unraveling complex or multifactorial symptoms that often affect multiple organ systems. The palliative model is based on a team approach that provides the patient with medical care while also addressing family, psychological and spiritual needs.
Unfortunately, the term palliative care is often used interchangeably with hospice care,which by definition is care given at or near the end of life. Palliative care is not hospice care. Much of hospice care, however, is the palliation of discomfort. In hospice care, diagnostic and curative treatments are not offered. In contrast, palliative care should be considered and administered at any time during a course of treatment.
During her second visit, Anne and the palliative specialist determine that she would not want to go through the same experience that her father had in the ICU. She doesn’t mind the short hospitalizations, she says, but when things get “bad,” she doesn’t want to “hang around.” The specialist asks if she has talked to anyone about her wishes. She answers, “No, but I have a living will which states if things are terminal, I should be let go.”
The specialist points out how ambiguous that statement might seem in certain contexts and asks if Anne has talked to the person who will have her durable power of attorney. “Not specifically,” she answers. “My daughter knows she will be the one, but we haven’t spoken about this.” The specialist again suggests how this might be a problem and recommends that Anne bring her daughter next time or arrange for a telephone conference for the three of them. He offers to write out her thoughts and wishes to ensure that her family is aware of what she values most. Advance care planning has begun.
Why do physicians shy away from planning in advance for the terminal aspects of care or disease? After all, mortality worldwide is 100%. For patients with organ failure, cancer or dementia, data on life expectancy do exist. Unfortunately, data also show that even in the weeks and days before death, prognosis on any given day remains statistically uncertain. Physicians are therefore hesitant to prognosticate or forecast for individual patients.
This hesitation may be a sound approach based on epidemiology, but we all must bring our own clinical judgment to bear. The most useful question is, “Would I be surprised if this person died in six months to a year?” If the answer is no, advance care planning should begin immediately.
Ideally, advance care planning begins at the time of diagnosis and is an ongoing process of discussion with regular re-evaluation. One problem we face is the lack of reimbursement for such detailed, difficult and often lengthy discussions. These dicey emotional interchanges have been called “surgical conversations,” indicating that it takes a surgeon’s skill to cut to the heart of the matter and lay bare what makes the most sense for each individual.
One recent study found that advance planning conversations with heart failure patients focused largely on disease management, not preparation for end of life. The authors conclude: “End of Life Care (EOLC) is rarely discussed. Some patients would welcome such conversations, but many do not realize the seriousness of their condition or do not wish to discuss end-of-life issues. Clinicians are unsure how to discuss the uncertain prognosis and risk of sudden death; fearing causing premature alarm and destruction of hope, they wait for cues from patients before raising EOLC issues. Consequently, the conversations rarely take place.”
The patient is likely often waiting for us to bring up the topic of advance planning. One option to get past this reluctance (on both sides) is to have, at minimum, a conversation with the patient or family centered on the concept of “hoping for the best but preparing for the worst.”
Anne’s advance care planning is time-consuming. She and the palliative specialist discuss prognosis and resuscitation, along with time-limited trials on the ventilator for more serious episodes of heart failure. Her daughter and other family members also have questions for the palliative specialist. Her opinions change over time, and her family physician and cardiologist are all made aware of her plans and preferences. There is paperwork associated with each phase of advance care planning. It is a detailed and ever-unfolding process.
Standard approaches to advanced care planning have failed. Most often no plan is made, or the plan is not useful or specific enough to the clinical situation. Other shortcomings include failure of family members to accept or understand the plan, and then to strongly oppose its implementation. Or, the plan is not available to the treating physician at the time of need. Sometimes a plan may be in place but will be overridden by the treating physician or facility because they are not comfortable with the plan or with withholding care.
The role of advance care planning is to really know and truly honor a patient’s wishes and informed plans regarding their health and healthcare. As formulated by Dr. Bernard Hammes of the Gunderson Lutheran Medical Foundation, the essential elements of effective planning are these: Plans must be created, and they must be specific and accurate. The plans must be understood and available and then incorporated into the decision-making process when necessary.
Twelve years after her first meeting with the palliative specialist, Anne has been hospitalized many times, at first infrequently, but now three or more times per year. She doesn’t get out much and tells her physicians she is starting to feel worn out and dreading the hospital, dreading the feeling as she slips into failure and gets more short of breath and begins to panic.
Anne goes back to the palliative specialist, who suggests a transition to home-based care. Anne continues on her cardiac medicine but also gets sedatives, pain relievers and anxiolytics as needed. She agrees not to return to the hospital, and she signs her POLST form for “No Resuscitation.”
Anne continues with home care and symptom management for eight months. Then, when weakness makes swallowing difficult, her pills are discontinued and she is made comfortable. She dies quietly with her family nine days later. All along the way, she and her family felt that her wishes were the driving force for her care and goals. Now her family feels she was well cared for. Her physicians worked together as a team. The physician who pronounced her death knew her well.
Palliative care and advance care planning work best when they are initiated early in the course of disease and are part of the ongoing care plan. The patients most suited to these approaches are those with life-threatening chronic or terminal disease. Plan early and provide palliation often. Your patients will thank you.
Dr. Duncan, an internist and infectious-disease specialist, is medical director of Good Medicine Consult & Advocacy in San Francisco.
1. Barclay S, et al, “End-of-life care conversations with heart failure patients,” Br J Gen Prac, 61:49-62 (2011).
American Academy of Hospice and Palliative Medicine: www.aahpm.org.
Hallenbeck JL, Palliative Care Perspectives, Oxford Univ Press (2003).
National Hospice and Palliative Care Organization: www.nhpco.org