Enhancing end-of-life decision making capacity for end-of-life care

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In 2013, Medicare paid $55 billion for medical bills during the last two months of patients’ lives.  25-30% of these medical expenses may have had no meaningful impact.

The legislation over end-of-life care consultation has not included specific directives on when, how and at what stage of illness, healthcare providers should initiate a conversation about end-of-life cares choices to elderly patients. As end-of-life consultation requires subtle communication skills beyond medical knowledge, healthcare providers often fail to offer comprehensive options for the sake of patients or do not do so in timely. Consequently, patients are often sustained for the last few days/weeks of their lives with aggressive treatments which do not improve their quality of life and incur huge unnecessary medical expenses. The care patients get is not necessarily what they want. For example, most terminally ill patients at the end-of-life stage prefer dying at home where they are more comfortable to dying in hospitals. But actually many of them ended up suffering from connecting to machines in the hospitals until they die.

end-of-lifeIt is imperative that we establish the legal and social norms about end-of-life care consultations using a patient-centered model. Among all other alternatives, the best norm should be that elderly people make their own wishes clear, long before they are incapacitated by disease. To make this happen, new policy should require physicians to take necessary training to learn the best practices in end-of-life care consultation. Regulators, such as CMS, DHHS, AMA, should pave all the ways for adopting this transformation.

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4 Responses to “Enhancing end-of-life decision making capacity for end-of-life care”

  1. martyk77 Says:

    Great post! I actually posted about the same topic. There was an article recently in the Atlantic Monthly about a physician who was creating videos about some of the commonly used interventions in end of life care. Even if patients created an advance directive, he thought that sometimes patients didn’t fully understand how invasive some of these treatments were. So, he created a short film about each intervention, and then he would show it to the patient while they were creating their advance directive.

    This is certainly a huge issue that needs more attention. There needs to be some way to require patients to think about this issue before it’s too late. Perhaps at 65 before they switch over to Medicaid?

  2. thesarafletcher Says:

    Thanks for the post. I really care about this topic as I see this all the time in the hospital (read “the hospital-dependant patient” in NEJM if you have a chance). I wonder how much of the problem is also to do with new, unfamiliar physicians caring for family members as inpatients, instead of their family physician, as most hospitals are moving toward a hospitalist model. One of my favorite PCPs (who does not admit inpatients) will come in before clinic when he has an inpatient considering comfort care in the ICU as a “social visit” to help the family talk through the process, and it is invaluable in making the last few days of someone’s life comfortable, rather than intervention after intervention in medical futility. It works mostly because he already has a trust with the patient and family.

    Marty, I like your idea of finding a way for elderly patients to talk about this BEFORE they are in the situation. If patients were given an incentive to have a living will with their express wishes, I wonder if more people would complete one and talk to their families about it?

  3. yaluan Says:

    This is a great topic and one that I am in total support. I am a palliative care physician and it is always difficult to know what the exact “right” moment to start the conversation on entry into palliative care or suggestion on forming a will. Currently, advanced care planning has been suggested to allow patients decide on the type of treatment they want in terminal stage before they have actually reach that stage. However, I have found that family members and patients are often hopeful. “Perhaps just one more treatment…” was the most common phrase that I have heard when I was working in the hospital, and it’s hard to convey to family or patients that there might not be that much time left.
    The issue of overuse of medications or unnecessary therapies has been one under discussion in the palliative field for years. It is extremely difficult to discontinue a therapy for patients at the terminal stage, and other physicians from other fields might actually reprimand the palliative physicians for doing so. The most common problem is one with nasogastric tube nutrition. There are numerous studies which show that excess nutrition at the terminal stage actually causes more harm to the patients than benefits. However, it is the norm as family members often encourage them to eat to gain “strength” and physicians from other fields often see “eating” as a way to help them get better. However, the patient’s quality of life at the end might actually become worse due to this excess therapy.
    Communication is definitely the key in these kinds of situations but it often takes skill and experience for a physician to determine how and when is the best time to start these conversations.

  4. patriclo3 Says:

    Thank you for this post – I have also worked as a home hospice physician and I feel that, unfortunately, not enough people know about palliative care and its benefits. In my regular clinic, as part of the new patient (adult) visit, we ask if they have an advanced directive regardless of their age. Even in the inpatient setting for new admissions, again regardless of the severity of their illness, we ask about their advanced directive. If they do not have one, we explain to them what their decisions entail and this makes the conversation easier later on if indeed the patient’s condition worsens. I agree that physicians need to spend more time in the beginning of their relationship with patients explaining the importance of having an advanced directive and that they should also encourage their family members to fill out an advanced directive. To wait until an emergency occurs to make this type of decision would not be wise and the general public needs to be more aware of this. I feel that a lot of medical residents either feel uncomfortable about this topic or that they are too busy to discuss the advanced directive with the patient. However, if they invest some time establishing this discussion in the beginning of a patient encounter, it is easier to bring it up again when the time comes for comfort care.

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