Paul Chiang, M.D., is a senior medical and practice advisor at the Home Centered Care Institute (HCCI) and medical director for a suburban Chicago practice, Northwestern Medicine HomeCare Physicians (HCP). Chiang has focused on delivering care to medically complex patients in the home, including those on hospice and palliative care.
In addition to these professional roles, Chiang took on caregiving when his family decided to move his parents, both older than 90, from an assisted living facility into the home when the coronavirus pandemic began to accelerate.
Chiang recently spoke with Hospice News to discuss how caregiving in the home, providing care to his patients and being a leader in his shared practice has been both a challenge and a reward during the ongoing pandemic.
Can you tell me more about your background in home care, and how hospice has come into play throughout your experience as a provider?
I’ve been making house calls for nearly 20 years. Most of my patients have difficulty getting to a doctor’s office. They are elderly, chronically ill or critically ill, and those struggling with advanced illnesses. Many of them die at home, and roughly 75% of them die with hospice care at home. And so, hospice care has been a very important part of the practice as far as the kind of patients receiving care.
How did you become a caregiver in addition to your role as a provider? What led to that decision?
My parents had actually been extremely happy in the assisted living facility over the last several years. They enjoyed their friends at the facility, the activities, the music, the crafts and the various other entertainment and programming there. When COVID hit, it was very confining and restraining for them, as patients were confined to their rooms and interactions with us as family were drastically reduced to decrease risk of spreading the disease.
As I watched them from afar during the early part of this pandemic, I began to understand that it was impacting them not only physically, but also taking a toll on them emotionally and mentally as well. My wife and I decided to bring them home out of concern for both their physical condition and emotional status for the time being during the outbreak, becoming hands-on caregivers during this crisis.
It was a tough decision with a lot to consider, it was earlier on when there were lots of unknowns and we wondered at their risks both in the facility and in our home, with me as a health care provider taking care of chronically ill patients. There were a lot of logistics to process through and get our home ready for them, as well as keeping them and my family safe.
What are the biggest needs you’re experiencing in caregiving and providing care to patients during this time of crisis?
I think it’s taken two things: patience and time.
Patience in that you’re dealing with people who are older, who have difficulty with vision and hearing, and understanding and processing all of this in terms of the pandemic and how to stay healthy and safe. It takes patience to communicate and retell the story of why we need to wear a mask, why we need to wash hands and all of that, explaining it over and over again.
With time, you have to allow quality time to take care of them. Things that I would think could get done in a couple minutes, it takes longer for someone who is older to accomplish. So that’s one sense, in terms of the amount of time it takes to deliver the care that’s necessary. The other flipside of the time equation is the interruption in my timeline in terms of what I need to do as a provider, as a health care professional, and also as a husband and as a father. It takes a longer time to give all those kinds of care while also being a caregiver. There’s less time that I have to attend to my family and their concerns, and just being a husband and a father.
What would you say is the largest challenge you’ve faced in the duality of your current professional and personal roles?
The biggest challenge for me, to capture in one word, would be balance. Balancing the care of my patients and my parents, and then balancing that with the care of myself.
I think all of us want to help our loved ones, to serve them, to take care of them. We don’t want them to fall down, we want them to be well-fed, we don’t want them to have any rashes or any sores or anything like that at all. Our natural desire is to do a great job, to love them, to take care of them and minimize harm. But all of that takes time. I noticed that I’m exercising less because I have less time. I eat dinner quicker because I have to help with getting them ready for bed and cleaning up the dishes and so on. The time in taking care of them will mean time away from myself, and finding that balance I think has been difficult for me. Yet, it helps me understand what my caregivers do day in and day out for patients, the time spent with hands-on care is time that they cannot do things for themselves.
How have you been navigating the difficulty of wearing both hats as a caregiver and provider in the home?
There is a divide emotionally between providing care on a professional basis and then doing it on a personal level for family, from a personal family perspective. Sometimes it’s hard to maintain that distinction because I’m their son and to maintain that professional critical thinking. I kind of devoid myself at times from the emotional, social side of being a family member. To say that it’s easy taking care of a loved one at home, that would be untrue. It’s been difficult, yet it’s been infinitely rewarding.
Being a son and a caregiver has reminded me that these are precious people that we are taking care of, they’re human beings. They are more than just abnormal lab results. Medicine tends to be very reductionistic, and we can look at patients from that angle of their list of symptoms and forget the fact that they have histories, personalities, stories and relationships. They are more than just symptoms that need to be managed and treated. They are people, and I have a chance to make an impact in their lives, to get to know them, understand their history, to support them in their needs through their illnesses, and to support their family members.
During this time, I’ve tried every day to learn something new about my parents that I didn’t know before. It’s been very rewarding and interesting to learn about their past and my past. Having my parents home has reminded me of that unique part of home-based care that we get to step into the patient’s house. We get to be part of this story, we get to experience that, we get to see the pictures on the wall and the religious artifacts and whatnot. It’s just a great reminder of why I do this professionally and find it so rewarding. I love what I do, I get a chance to be a doctor, I get a chance to take care of people.
How has your personal experience as a son and caregiver influenced your approach to care as a physician in your own practice?
In the practice I share, we know each other well and it’s almost like a small family. They’re aware of what is happening with my parents and some of the challenges that we face at home taking care of them. It puts out what I call a “thickness” of me as a leader. Thick in a sense that I’m more than just a doctor, I’m more than just the medical director for this practice. I have a personal side and I have challenges at home that may be impacting things. I think it’s good for colleagues to see that their leader is trying, the leader has a personal side and the leader faces challenges at home, but also that I’m really enjoying it all sincerely, both taking care of patients and my parents. So as a leader, they can see the three-dimensional side of who I am, or the multi-dimensional sides. Yes, I’m a clinician. I’m a leader in the practice, but I’m also a person trying to provide care, sort through life, go through COVID challenges, and yet still come out with joy. I hope that’s the kind of the overall message that I’m sending out to staff, is that this caregiving along with being a provider has been a good experience.
What has been the most significant challenge that you have encountered as a caregiver, and how did your clinical experience influence your course of action?
One of the things that we teach at HCCI, as well as when residents or students are rotating here with us, is that as we take care of our patients who are chronically ill and facing a lot of challenges because of their multi-complexity in their illnesses, we talk first finding out what matters to them. And I had to face this in an incident that occurred early on in caring for my parents. When a change in their condition happened, my initial reaction as a son was debating whether to call an ambulance or do something else. But on a professional reflection side, I reminded myself as I was having that conversation in my head and asking what the most important thing was to them. What would they want me to do at this moment?
As a clinician, this teaches you to find out what matters most to the patient. I’m now applying it as a son at the bedside taking care of and looking on to my parents, and trying to avoid that automatic reflex and just reinforcing or reminding myself to do the thing that will help achieve that goal. Being a clinician has influenced caregiving in that particular circumstance, and it will in others that may come up as well.
What has been your biggest takeaway from the duality of roles during the pandemic?
One lesson during this pandemic has been that I must take care of myself, not in a selfish way, but because if I don’t take care of myself physically and emotionally, then that can impact the lives of my family and the lives of the very people I want to take care of. Care of the self is very important, and I’m going to keep on reminding my caregivers of that even past COVID and past the pandemic, that they must take care of themselves. They need to get out, they need to decompress. During the pandemic, it may take finding more creative ways to do that, but I think balance and caring for the self are important takeaways from this pandemic for me.