January 30th, 2018
As physicians our role is to give patients the best care while doing the least harm. It’s natural to go to great lengths in our pursuit to heal. But when and where do we stop? Sometimes we’re lucky and patients outline their healthcare goals. This, however, is rare. More often, we are left having difficult conversations in acute settings trying to gain an understanding of people’s wishes. THIS NEEDS TO CHANGE!
Anyone and everyone should be having this discussion! Ideally, the conversation starts by a physician that knows the patient the best. This is usually a Family Medicine or Internal Medicine physician that they see in the clinic, but it doesn’t have to be. Any physician that participates in their care can (and should) encourage the patient to develop an end of life care plan. For example, a hepatologist for cirrhosis, a cardiologist for heart failure, oncologist for cancer, or a neurologist for strokes can participate in this conversation.
In my opinion, the earlier the conversation starts,the better. A HUGE misconception is that patients must be terminal to have these conversations. This is simply not true. However, with age, conversations must be revisited. A 30 year old’ goals are and should be much different than an 80 year olds’. The New England Medical Journal article “Care near the End of Life” recommends that perhaps these discussions might be had during key milestones – getting married, new job, eligible for medicare, etc. These conversations need to start in the clinic and must be addressed and re-addressed during admissions. We need to have family meetings early and keep patients and families up-to-date with patient’s medical statuses to prevent unfortunate surprises or false expectations.
These conversations should entail goals including code status (resuscitation and intubation), other end of life decisions (dialysis, tube feeding), presence or creation of an advanced directive, and establishing a power of attorney. Overall, it is important to get an idea of the quality of life they wish to lead during the end of their life. Once you have these conversations, you should document and communicate them! This is the best way to ensure that everyone involved in that patient’s care will respect their wishes. We have all heard the nightmare stories where a DNR/DNI patient gets resuscitated. Do not make that mistake!
There is no doubt that these conversations are hard. Given the limited exposure in medical school, it’s no wonder these meetings are viewed with fear. The trepidation to addressing end of life care with patients should be removed. These skills should be taught and honed in during residency. However, interns and residents are often times left to learn these skills by trial and error. Remember that we as health care professions are not alone. Palliative care teams exist for this very reason! They should definitely be a part of the discussion.
It’s been demonstrated that when palliative care is combined with active treatment for patients with advanced cancer, the quality and duration of life is enhanced. Similar findings have been shown in many other chronic illnesses. As their physician, explain their role of palliative care to your patients and dispel any misconceptions. So, what is their role? I’m glad you asked! This type of care is to provide relief from pain and other symptoms to support the BEST quality of life for the longest possible time. Hospice is a SMALL part of the overall care they deliver. The misconception that palliative care is hospice care prevent so many patients from seeking out the quality of life they deserve
Keep in mind ,however, as the physician with the most day to day impact on their healthcare, we should be a huge part of the conversations. Too often, I see residents deferring to palliative care and skipping these meetings. It is pivotal to relay the condition of the patient and what your team has been doing. We head towards the future where by 2030, 20% of Americans will be more than 65 years old and an increasing percentage are living with one or more chronic illnesses. It is, therefore, imperative that we as a medical community should have these conversations and understand the needs and wishes of our patients.
I would love to hear your thoughts of end of life care discussions and challenges you have encountered with your patients or families. I attached some great articles published in NEMJ addressing palliative care and its role. Comment below!