Midnight ramblings of the DNP student:
This is such an interesting conversation for me. My identified specialty has been hospice and palliative care for the last 7 years, and 5 years of that has been pediatric hospice and palliative care. This discussion around quality of life, suffering, and futility is one that I am definitely passionate about. I started my nursing career as a neonatal intensive care nurse. To say that futility was very present in my practice was an understatement. I can remember at the early onset of my career being very aware that it cost around 4,000 dollars a day just for the bed space that the premature infant that I was caring for occupied. I never thought twice about that then. Now I think long and hard, and it has more to do with the loss of quality of life versus the cost of that bed space.
As someone who has had many discussions with patients and families around quality of life and goals of care I would absolutely advocate for the fact that quality of life is an individual perception. I have practiced throughout my hospice career asking the question, "what is important to you?" or "what are you hoping for?" The surprising part is that the answer is not usually what we as providers expect. It is not usually the patient saying, "a cure," or "not to die," but that they want to be free from suffering or they want their loved one to be okay. It is that they want to make it to a milestone like a birthday or graduation. The issue that we have as a healthcare industry is that we quit including our patients in the conversation. We quit being honest and respecting autonomy in the name of protecting our patients and families from the hard conversations. The reality is that we are protecting ourselves because these conversations are hard. I tell my students way more than they want to hear several things. The first thing is that we don't own our patient's hope. It is our role to give them factual information to aid them in making informed decisions about their own healthcare. They are going to continue to hope regardless of the factual information we give them, because hope is individual and personal. The second aspect is that these conversations improve outcomes, not hinder them. If we don't give our patients the information they need to make informed decisions they will continue to follow a path that may induce suffering and hinder quality of life, the quality of life that they have left. Doing all of the things does not automatically equal doing all of the right things for that patient. Futility leads to suffering and burden which is exactly what we aim to save our patients from. The 60 minutes documentary illustrated this truth beautifully.
"We need to refocus
our efforts toward end-of-life care so that we can better identify the
needs of patients with advanced illness, and then offer intensive
treatment when patients want it, help enable a more peaceful death when
they don’t, and learn how to manage that transition" (Jha, 2018, p.
631).
THIS IS MY PASSION...
In a semester in which I was questioning what I was doing this discussion post came at just the right time. Talk about the hard stuff...it is worth more than you'll ever know.
#midnightdnpposts #passion #hpm #pedspal #mycalling
Reference
Jha, A. K. (2018). End-of-Life Care, Not End-of-Life Spending. Jama, 320(7), 631. doi:10.1001/jama.2018.11177
This is such an interesting conversation for me. My identified specialty has been hospice and palliative care for the last 7 years, and 5 years of that has been pediatric hospice and palliative care. This discussion around quality of life, suffering, and futility is one that I am definitely passionate about. I started my nursing career as a neonatal intensive care nurse. To say that futility was very present in my practice was an understatement. I can remember at the early onset of my career being very aware that it cost around 4,000 dollars a day just for the bed space that the premature infant that I was caring for occupied. I never thought twice about that then. Now I think long and hard, and it has more to do with the loss of quality of life versus the cost of that bed space.
As someone who has had many discussions with patients and families around quality of life and goals of care I would absolutely advocate for the fact that quality of life is an individual perception. I have practiced throughout my hospice career asking the question, "what is important to you?" or "what are you hoping for?" The surprising part is that the answer is not usually what we as providers expect. It is not usually the patient saying, "a cure," or "not to die," but that they want to be free from suffering or they want their loved one to be okay. It is that they want to make it to a milestone like a birthday or graduation. The issue that we have as a healthcare industry is that we quit including our patients in the conversation. We quit being honest and respecting autonomy in the name of protecting our patients and families from the hard conversations. The reality is that we are protecting ourselves because these conversations are hard. I tell my students way more than they want to hear several things. The first thing is that we don't own our patient's hope. It is our role to give them factual information to aid them in making informed decisions about their own healthcare. They are going to continue to hope regardless of the factual information we give them, because hope is individual and personal. The second aspect is that these conversations improve outcomes, not hinder them. If we don't give our patients the information they need to make informed decisions they will continue to follow a path that may induce suffering and hinder quality of life, the quality of life that they have left. Doing all of the things does not automatically equal doing all of the right things for that patient. Futility leads to suffering and burden which is exactly what we aim to save our patients from. The 60 minutes documentary illustrated this truth beautifully.
https://youtu.be/F6xPBmkrn0g
(And by the way this 60minutes was in 2010...we haven't gained much traction in 9 years which is heartbreaking to me)
THIS IS MY PASSION...
In a semester in which I was questioning what I was doing this discussion post came at just the right time. Talk about the hard stuff...it is worth more than you'll ever know.
#midnightdnpposts #passion #hpm #pedspal #mycalling
Reference
Jha, A. K. (2018). End-of-Life Care, Not End-of-Life Spending. Jama, 320(7), 631. doi:10.1001/jama.2018.11177
