Many of you may have already seen this video, however, from the time I first saw it, I wanted to show anyone that would sit down for a few minutes to watch it. I think we often wonder what’s the best way to disperse important information to the masses and I think ZdoggMD has found that way. Although many of his videos are funny parodies of songs to teach or just to have fun, this is one in which the tone is serious. As those of us who work in the health care field know, advance care planning is not often done. Poor unsuspecting families, unaware of what’s to come during an unplanned medical event, often get blindsided when their loved one is in the hospital. Their loved one is no longer able to make their own decisions and the hospital physicians and staff are looking to them to make difficult medical decisions. Atrocities occur daily in the ICU, especially to people with advanced chronic illnesses or age because the family who is left behind to deal with these issues is feeling an emotional roller coaster of guilt, uncertainty, anger, fear, selfishness and anxiety (to name a few) and are often paralyzed to make difficult decisions. I think the Coalition for Compassionate Care of California (link below), an organization responsible for implementing POLST in California, has done an immense job in actively taking this issue a huge step forward. With the help of the Coalition, National Healthcare Decisions Day (link below), ZdoggMD and countless other organizations and healthcare professionals we can make a change one person at a time. Please share this video with your family, friends and colleagues. A big shout out to #ZdoggMD!
“I’m happy to see that he’s stabilized for now, but it’s also a good time to revisit your family’s goals for Brian for when another episode like this happens again.”
Brian’s father’s eyes widen, he whispers, and he motions for me and his wife to join him in the adjoining living room.
Here we go again.
I lean in to speak to Brian, my 21 year old patient who’s been living – some may call it anyway – with advanced Lou Gehrig’s Disease for the better part of his adolescence. I let him know that I’d be back to examine him shortly. I’m certain he’s been “locked in” for quite some time, but I have no idea how much he actually hears me. I’ve tried to speak openly in front of him before, but out of respect for those who’ve known him all his life the serious conversations are always deferred to the living room space as they feel heavy topics may upset him. The patient’s corner is solely reserved for speaking about urine, ventilator settings, and g-tube residuals.
What every 21 year old wants to hear about. Poor guy.
I sit down with Brian’s parents. “We’ve been thinking about the code status again, and talking it over. We definitely don’t want him to have his ribs broken – we know he’s broken bones just moving before. I know we said change it to ‘DNR’ last time, but I think we’re going to leave him ‘full code’ for now.”
Dig deep for that patience. It’s not necessarily two steps back. They’re not the most difficult family on your census – cut them some slack.
“What made you change your mind?”
The father begins, “Brian’s mother asked him …”
Is she kidding herself? He doesn’t move, he doesn’t even blink his eyes! They may be agreeable, but they’re certainly some of the worst cases of denial I’ve ever seen.
“… and he expressed wanting to try. Maybe it’s not what we want for him, but we want to respect his wishes .”
Sincere. Delusional, but sincere.
“I know it’s a difficult decision. I don’t want to push you one way or the other. If you feel Brian and your family is not ready to make a change in his long-term plans, we can revisit that at a later time-“
The vibrator on my work phone goes off. I lean over to silence the ringer.
It’s probably not an emergency.
“I’m sorry. I just want to stress to you the importance of what I’m sure we’ve spoken about already. Though we’re not sure if X would survive a cardiac arrest, we do know that he would more than likely not be the same neurologically should he survive. His body has been through too much.”
The vibrator on my phone goes off again. I quickly silence it.
If this nurse doesn’t stop calling me I’ll never get through this!
I start again, “If you believe he knows then I would agree with your choice to respect his wishes, but if you’re not certain that he knows that, or think that he wouldn’t want that, then I would encourage you to make a decision about change sooner than later.”
Brian’s father speaks to his spouse in Japanese. There’s a heavy silence. She responds back in Japanese. Some more silence.
I sneak a peek down at my watch when they’ve looked away. I’ve already spent more time than I had planned here, but I don’t want to look like I have.
Am I giving too much of myself to my patients? Will there be any leftover for my kid?
Am I a good wife?
“I’m so sorry your family is going through this difficult process,” I add.
The parents nod. Then more discussion in Japanese. More silence.
I hope my Mom is okay. I should call her.
I don’t speak Japanese, but I notice the parents’ tone changes. Even the silence changes. The mother is nodding, holding the father’s hand.
I look over at Brian – lying motionless in his hospital bed, eyes fixed ahead at the ceiling. His silence is heavy, too.
He must be tired, too.
Or is it projection? When was my last vacation?
The silence breaks. Brian’s father speaks –
“We think that Brian would still want to remain full code even if he knew he wouldn’t be the same.”
I just wanted to congratulate HPMFellow who, as of 7/1/14, is no longer a fellow but now a full fledged hospice and palliative care attending. As I mentioned in the past, I had the honor and privilege of being her hospice and palliative care mentor for 6 weeks while she was still a medical student. It was amazing to see her growth in our field within the 6 week rotation and at that time she was sure hospice and palliative medicine was for her. She’s an amazing person and showed me that she could be a great physician. I’m very proud and again just want to congratulate her. She has 4 more journal entries that I will be publishing under HPMFellow, however, if she continues to contribute, maybe she’ll change it to HPMattending or something :-).
Here I sit at the end of hospice IDT (interdisciplinary team) meeting with a sense of sadness. I feel compelled to write this entry. We have just reviewed and had a quiet moment for all the patients who have died in the last week. The list is long as usual but what saddens me the most is there are names on this list that I’ve never heard before. To be the Medical Director of a hospice and to not recognize a name is a tragedy. If this only happened once in a while it wouldn’t be so sad but it happens every week without fail. Why does this happen? It happens because so many patients and families don’t know about the benefits of hospice care. They don’t realize that hospice is about LIVING not dying. It’s about living the rest of your life on your terms, living your life with as much quality as possible, it’s about allowing your family to participate in a part of your life that will unfold no matter what we do. If you couple the above with physicians avoiding conversations related to End-of-Life Care, you get patients referred to hospice in the last hours and days of their life. I look at these names and feel regret for the patients and families as I think how much help our hospice team could have been physically, spiritually, psychologically and socially if we’d been involved during the last six months of their life. Next week I’ll have to start my apologies all over again to a list of names I’ve never seen before. “Sorry, I don’t recognize your name” I’ll be muttering under my breath as I go down the list and read the names one by one.
I’m excited. The American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association Annual Assembly is about to begin here in Boston. Preconference workshops start tomorrow and regular education sessions start Thurs 3/3/10. I’m already here blogging from my hotel room. I can’t wait to connect with old friends, colleagues and mentors. It seems that every year the assembly grows and more is offered every year. This year Gail Sheehy, best-selling author and AARP caregiving ambassador, will discuss her recent palliative care advocacy efforts and lessons she learned from her own personal experiences. She has a soon-to-be-released book, Passages in Caregiving: Turning Chaos into Confidence. I am unable to come on a yearly basis so I savor the time when I am able to attend. I will try and meet up with the Pallimed group as well as the Geripal group if I can find them. Well, I’ll keep you posted on the interesting things happening at this assembly. For more information please visit http://www.aahpm.org.