Q and A With Jeff Stoneberg
How does Palliative Care help in reducing stress around treatment decision-making?
A consultation with a palliative care specialist can help someone understand their underlying disease process and what may be expected throughout the course of an illness so we can be better prepared if/when complications arise. One cannot predict what the future will hold, so having a plan in place before a serious illness worsens provides a framework for making difficult decisions in a way that provides confidence that the medical plan will both address their needs, and remain within the boundaries of their accepted treatment preferences. If we know what is important to someone, in terms of how they measure quality of life, then we can tailor a plan that will include those things that are most important to them. Open, honest communication, which is also direct and compassionate, helps to prepare the patient and family and align their expectations to those of the medical team. When expectations for outcomes differ, then doubt can arise leading to mistrust and conflict and stress. Maintaining hope without giving false hope can be a delicate conversation, but honesty and transparency must always be paramount when discussing one’s illness. Also, knowing that there is a team behind you to support both you and your family through the tough times helps to reduce the stress of an advanced illness.
In your opinion, what is the most misunderstood when it comes to Palliative Care?
It is the misunderstanding that palliative care and hospice are synonymous. They are not. When the referring clinician has the misunderstanding that hospice and palliative care are the same thing, then they will always refer their patients to palliative care too late in the disease process when the patient is nearing the end of life and it unfortunately reinforces this misunderstanding. This results in missed opportunities for their patients to have improved pain and symptom control, to gain a better understanding of what matters to the patient regarding their quality of life, and to identify their wishes in terms of preparing advance care planning documents. When a patient/family have the same misunderstanding that hospice and palliative care are the same thing, they may put up a barrier because they may not want to address the subject of end of life, which is what hospice is focused on. When palliative care can be involved earlier in the disease course, then when someone does get sicker and is in need of hospice, these discussions have already taken place and it feels like the best next step in their care, rather than an abrupt 180 degree turn from active, aggressive treatment, to focusing on comfort and end of life care. As a palliative care physician, I hope to walk the path with the patient throughout the course of an illness, and to assist and support them as their health may fail over time, and not to be just the person that may help them have a comfortable and natural death. There is a lot we can do to help someone with an advanced illness live as well as possible before it is time to help ease them into hospice care.
How would you say the health crisis of 2020 impacted the field of Palliative Medicine?
The year of COVID-19 has forced us to evaluate how we deliver care to our patients. Those patients who are engaged with a palliative care program are often weak, frail, and progressively immobile, making it very difficult or impossible to make a visit to their doctor. COVID-19 has forced the medical system to re-evaluate how we engage with our patients and enhanced our ability to offer video visits in a way that was never possible before. Not only is this a great convenience for those ill patients who cannot travel to the doctor, but it greatly improves our outreach to those people who live in remote areas which may have poor access to care. Lastly, the new video processes with proper billing reimbursement allows the clinician to see a greater number of patients per day without wasting time sitting in traffic going from one house call to another.
Alternatively, how do you think the field of palliative medicine helped during the pandemic?
The pandemic forced hospitals to close their doors to families who wished to visit a loved one. As a palliative care physician working in a large, tertiary hospital, we saw the sickest of the sick and our ICUs were at capacity with COVID-19 patients requiring mechanical ventilation. Without the ability to visit, families have to trust a person they have likely never met to assist in complex and emotional decisions, often surrounding the end of life of a person who was otherwise healthy prior to COVID-19. The only way to establish this trust is through open, honest and compassionate communication and to reach out to the family proactively on a daily basis. This takes a lot of time and effort to establish that trust so that when there is a decision that needs to be made, the family is able to know that the information being provided is accurate and easily understood. The time that we committed to each patient also freed the ICU physician to care for more patients. Working together, we are able to care for more patients than we could possibly do alone.
What have you found helpful in explaining Palliative Care and Advance Care Planning to patients?
I tell my patients and families that my job as a palliative care physician is to help them understand the underlying illness, to ensure that they are comfortable throughout, and to make sure that they have the same information that we do because you cannot make good decisions without good information. Advance care planning is something that every individual should have and tell them that I have one myself even though I am young and healthy. I also share my own mother’s story of how she and my dad and I sat together and completed an advance directive for her shortly after she was diagnosed with pancreatic cancer. (My dad completed one at the same time.) Even though we could never have predicted the complications that she endured following a major surgery to remove the pancreatic mass, that advance directive served as a guide for our decision making so that we were sure not to cross a line in the sand that she had drawn. She had strong convictions about what was important to her quality of life and identified situations that she would not permit, such as living on a ventilator or other forms of artificial life support, and this was captured in her advance directive document. When we were forced to re-evaluate her condition after surgery, and the many complications that she endured, her advance directive served as a guide to tell us what to do in her own words, so that the decision to remove her from the ventilator was not our decision, it was hers. The difference between carrying out her known wishes from having to guess what she would have wanted provided my dad and I with not only the greatest sense of relief and it also reinforced that we were making the right decision.
Why are we reluctant to face advance care planning and decisions before illness or injury strike?
There may be many reasons for this. Some may be cultural or religious in nature, but in my opinion, it is because it is a challenging and emotional subject of which to discuss. Most people are not comfortable with talking about illness or death, but what is not well understood outside of the medical field is that there are worse things in life, than death. If we are not able to address someone’s wishes for their healthcare, then my fear is that they may end up in a situation where they would say, “If I knew it was going to be like this, I would have made a different decision.” This is what I feel is the greatest risk if advance care planning is not addressed.
Why is it important to have a plan before we need one?
A path without a destination will just meander without ever reaching the goal. If we can understand what we might want for ourselves in the setting of an illness, and can be prepared for complications before they arise, we will be better equipped to handle them in a way that is satisfactory. Making a plan ahead of time when we can think clearly about what we might want for ourselves will yield a well thought out plan that can develop over time. Trying to make crucial, complex and emotional decisions in a time of great stress is incredibly difficult and will often only focus on the immediate medical decision without thoughtful consideration of the outcome and if that would be acceptable to the patient, and this often leads to unwanted and non-beneficial medical interventions.
If you could have one conversation with someone making end-of-life decisions what would be the most important for you to convey?
When discussing end of life decisions, the question is not ‘if you want to live or die,’ the question is ‘how do you want to live.’ When talking with a patient about end of life decisions, I am often told, “I want to live.” That way of thinking will focus on life prolonging interventions without consideration to the quality of life. By that strategy, my mother would have wound up in a nursing facility with a feeding tube, two things she told us clearly she would not permit. Focusing on how you measure your quality of life and what is important to you provides others with the knowledge that those things should be included in your end of life plan. Simply focusing on what can be done next to extend someone’s life will result in a poor quality of life and the failure to embrace what is truly important to someone if their prognosis is limited.
If people would like to reach you directly for additional information or assistance, how would they do so?
I am most easily reached by my work email, which is firstname.lastname@example.org.