End of Life Care


Last year, Medicare paid 55 BILLION dollars to cover the expenses generated during the last two months of people’s lives! Studies estimate that this accounts for about 25% of the entire Medicare budget. At a time when budgets are being cut and necessary projects are being delayed due to insufficient funds, we as a society have to ask ourselves if spending this much money on end of life care is worth it and what are other alternatives?

One alternative which can decrease costs, and – more importantly – improve quality of life for dying people is palliative or hospice care. However, in order to take advantage of this care, it requires people to think about exactly how they want to die and what medical treatments they are willing to accept. Are they willing to be ventilated if they have trouble breathing, or do they want to be resuscitated if their heart stops?

While they are still relatively healthy, people with terminal disease should get an advance directive and appoint a power of attorney. Thinking about these issues prior to the finals days will not only prevent patients from having to endure procedures which they would not have wanted, but it will also save billions of dollars. The final days of a person’s life should be made as comfortable as possible, and not everybody wants to use the incredible advances of modern medicine just to squeeze out a few extra days.


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16 Responses to “End of Life Care”

  1. jdricken Says:

    Very interesting topic! As a General Surgery resident at a busy level I trauma center and regional burn unit, I certainly can relate to this post.

    I absolutely agree that the best solution to the entire issue would be for everybody to have advanced directives, unfortunately, more often than not, we must care for patients who are unable to make decisions for themselves and do not have advanced directives. How can we get more people to make advanced directives? What do we do when they don’t have them, but are unable to make decisions for themselves?

    Do we need to address this in ways such as establishment of policies or policy reform? Anecdotally, the majority of the futile medical care that is provided to our essentially dead patients, is done at the demands of the family members. Maybe we are able to get the patient off of the ventilator, but they have a tracheostomy and a feeding tube, and are in a persistent vegetative state. Then the family refuses to take the patients home, and they are left in the hospital to consume more health care dollars. This scenario is all too common. What do we do about this?

    Another scenario might be how often we go “all in” on patients with such severe injuries that their chance of survival is so low, and even if they do survive, their quality of life will be essentially non-existent. We perform time consuming, very high risk procedures, or we perform very costly procedures on people that have very little chance of surviving. This consumes an immense amount of health care dollars.

    So, what do we do? Do we establish a policy that will force everybody to have advanced directives? If care and interventions are determined to be futile, should the family have the right to insist that everything still be done? Should there be a policy in place that would somehow allow physicians to document the futility of a situation, and then go through a process to withdraw care or place in hospice/comfort care only? As I have observed, physicians get very emotionally involved and want to save everybody’s life, so we don’t always make the best decisions as far as how far to go or how much to do for a patient when we know it is futile. So, I do believe that the entire responsibility cannot be put on the physicians, because they cannot handle it.

    What do we do? What can be done? There is no doubt that an excessive amount of health care dollars are spent on health care for futile situations when patients near the end of life.

  2. lbuchhalter Says:

    In response to the comment above, my home institution has made “living will” part of intake procedures. All patients are asked if they have one, and if not, offered information. One concern is that we will move towards mandatory documentation of end of life wishes, but these documents will be sterile, and do more to protect hospitals legally than to represent the beliefs of patients. In my opinion, physicians need to take the initiative to begin this conversation, difficult as it might be with healthy patients. End of life wishes can be summarized in a document, but are ideally a conversation, as these beliefs can be fluid and complicated.

  3. manasairwin Says:

    I agree with the above response. We as physicians need to do a better job asking patients before they get sick to think about end of life issues. Part of that is informing patients what really can happen with resuscitation and after. There also needs to be discussion among family members so that everyone is on the same page. So many times family members are not willing to let go even though they know that the patient would not want to be kept alive at all costs. There was a recent story on NPR about LaCrosse, Wisconsin where 96% of the population has advanced directives. The link is below.


  4. jacquelinewoodrum Says:

    As a physician who has frank discussions with patients about creating their Living Will or DNR status, I see resistance to this topic stemming from cultural fear. People in the US are afraid to die, afraid of the unknown (for a variety of reasons)… The topic of death or dying is often considered taboo and frequently provokes intense emotional feelings from the patient or from the family members themselves. I would respectfully encourage everyone to pause & take several steps backward, to look at this issue with a broader lens and understand the bigger picture of the mind-spirit-body connection, which influences health and the patient’s decision (or inability to make one).

  5. jdricken Says:

    So glad to see that this is a topic of interest to so many others. My home institution asks about advanced directives as part of the admission process as well. Unfortunately, for too many of our patients, they are already unable to make decisions for themselves at admission. They are severely injured trauma or burn patients. I really think that this topic needs to be discussed with patients long before hospital admission ever occurs, such as at health maintenance visits with the primary care physician. This discussion needs to be had with patients as soon as they reach legal age, which I guess would be 18 years old.

    I agree that the topic of death may be difficult, and it is even more difficult when death is actively impending. Family members are far too emotionally wrapped up in the situation to be at all rational or concerned with the best interests of the patient. In order to not put family members in such a predicament, it all goes back to how necessary it is to have advanced directives very early in life, long before illness and death are issues.

  6. atrivedi1230 Says:

    I think this is an interesting topic, and many of the comments were insightful to read. I also share the perspective of many of the physicians that have commented — the topic is addressed upon admission to the hospital, but steps need to be taken ahead of time. The idea of having primary care physicians take care of it is a good option, but that allows the people without primary care access to fall through the gaps (hopefully not as big of an issue with the ACA!)

    I was listening to the Planet Money podcast the other day and heard an episode about how organ donation registration got linked to the motor vehicle agencies. We take it for granted, but at the time, it was a huge adjustment for the MVA employees, the organ donation agencies, and all others involved. Perhaps a step like that, outside of the direct medical field, could be a viable option for promoting advanced directives as well. Not sure if the MVA would represent the best option or not, but it could be a point to consider.

  7. vtapia2014 Says:

    This is a topic that needs fundamental revision at both the policy and society levels. We Americans are uncomfortable with the idea of death, perhaps because we have an unconscious fear that if we speak about it, ‘it’ becomes real. We must change this, but it takes time to change a culture, especially when it is rooted in our instinct to survive. Treating death as “bad” and life as “good” pits us against the inevitable and triggers fear within us. Since we can’t avoid death, why not talk about it? Perhaps talking about end-of-life care would also put our loved ones at ease and enable us to appreciate our time together. This is why advanced directives and hospice and end of life care providers are so important. They can help families understand the difference between quality of life versus quantity of life and guide them towards making the decisions that are right for them at the end of a loved one’s life.

  8. zechariahfranks Says:

    Great comments everyone, and I agree that this is an important issue that needs to be addressed. I would like to add my two cents because it does not seem this topic has come up yet. Many are bringing up the topic of primary care physicians or simply physicians in difficult situations to talk about advanced directives and end of life decisions, but what about showing the patients what some of this end of life care looks like? If you were to show a terminally ill cancer patient what is looks like to be resuscitated after a cardiac arrest, how would they respond to signing a DNR? Or show someone who has early stages of Alzheimer’s what is like to live with a feeding tube, etc., would they opt out of that burden on their family and themselves? Research is showing that showing people neutral videos of what the procedures or patients look like decreases their likelihood of signing up for end of life care(done so in a controlled environment with staff on hand to answer questions and completely avoide opportunity to manipulate patients). ( ref: http://hms.harvard.edu/news/video-affects-end-life-decisions-12-10-12) We are social creatures and simply talking about things does not necessarily cause us to think seriously about it. Visually seeing what people go through can have a major impact on our ability to make informed decisions. I hope this idea grows and is implemented, because I think it could have a major impact on the way people approach end of life care. It definitely does not address most of the points above, but it could be a start if done ethically and humanely. Cheers!

  9. Catherine Cheung Says:

    This is an issue that I struggle with almost on a daily basis as well. Over the years, I am coming to the conclusion that this issue is part of an even larger “public/civic education” knowledge and attitude gap that needs to be addressed at a much earlier life stage than when patients present to their hospitals in acute distress and are asked if they have an advanced directive.

    I’m sure that if you interview lawyers and accountants, they will also lament the lack of advanced planning for estates and wills etc. I’m starting to wonder whether education on handling finances, making wills, advance directives, powers of attorney for care etc should be part of public education (eg. in high school). At least by the time children reach age of majority, they will know the basic concepts of why these things are important.

  10. jackiewallace Says:

    Thank you for a great blog, and equally interesting comments. I couldn’t agree with you more, Catherine, about the need for education. I’ve been hearing about a push to provide financial education in the high schools, and I agree that end of life care/decisions should also be included.
    I heard an interesting snippet on NPR, in addition to the segment listed by Manasa above (sorry, for the life of me I can’t find the link); the reporter did an informal survey among people on the street and physicians at a conference re: end of life decisions. The physicians overwhelmingly chose NOT to accept care, while non-providers were quite the opposite. That speaks to me of a great information divide that needs to be eradicated.

  11. karinswihart Says:

    Wow! I love all these comments! Very thought provoking. The need for education prior to illness is very important, as is getting people to think through advanced directives early on in life.

    From my experience, the American culture has not had to deal with death in such was as our African counterparts.
    A great organization is taking the lead in Africa regarding palliative care. (http://www.africanpalliativecare.org/about/about-apca/). They focus on information and integration into the healthcare system which I think is the cornerstone to responding to this issue.

    Here are a couple NPR articles that I found and think are great resources:


    http://www.npr.org/2012/03/26/149395633/a-doctor-s-quest-to-offer-best-care-at-end-of-life (((I think this article has a great approach given the baby boomers impact on healthcare today)))

  12. rachellcurrie Says:

    This is a very interesting and worthwhile topic to explore, thank you for raising it. I concur with the later posts that these topics should be part of the general public discourse before families actually have a member enter into acute care. It is important not only from a healthcare cost point of view, but also from a human rights point of view, to ensure that the desires of the patient and family are adhered to.

    Sometimes the issue is turned on its head and it’s the hospital that demands more care than is desired, to protect itself legally, or perhaps to act on political or moral values of the management. I am thinking of the recent legal case in which a young and otherwise healthy pregnant woman suffered a stroke and was pronounced brain dead, only to be kept on life support against the will of her family to protect the life of the unborn fetus. http://www.nytimes.com/2014/01/27/us/texas-hospital-to-end-life-support-for-pregnant-brain-dead-woman.html?_r=0

    It is therefore ideal if everyone even healthy people draw up living wills to protect their rights in such situations, when they are thinking logically long before they are in a vulnerable position due to illness. We in PH should advocate that, and I like the idea of addressing the topic in life-skills classes in high school. There are many controversial legal cases like this one, also including Terri Schiavo, that can serve as a catalyst for media advocating for people to draw up living wills that reflect their end-of-life desires.

  13. rahasan2014 Says:

    Very interesting and important topic. We absolutely need to have a reasonable discussion on this. It’s also a very good time to readdress Medicare and other health insurance companies’ policy on palliative/hospice care and people’s care of choice during the last days of their life. Health care cost is sky rocketing every year. It’s very important that we prioritize issues and reassess spending.
    Here are couple of things that we can consider doing to address this issue:
    i) Incorporate a new policy where every time a person enrolls/buys a new health insurance policy, it will have an advance directive section which will ask about that persons choice regarding palliative care, do not resuscitate (DNR) or allow natural death (AND). It will create an environment for discussion and create more awareness. Health insurance companies can also train some representatives to discuss this issue with insurance buyers.
    ii) Primary care physicians can talk with their patients about advance directive during regular health check-ups. A reimbursement code can be adapted through insurance policies if a patient enroll/sign up regarding advance life directive.
    In our day to day busy life we hardly ever think how a road accident can completely change our lives forever! I am sure no one wants to put their loved ones in a situation where they have to make a very hard decision in the last moments of their loved one’s life. This discussion will not only save a lot of money but also will relief a lot of families from making difficult decisions during the last moments of their loved ones.

  14. samarnahas Says:

    Marty-thank you for the interesting and very important topic, and thanks for all the comment.
    As a Gynecologic Oncologist, I deal daily with women with cancer and unfortunately with their end of life support as well. I have many stories from them and their families, I feel blessed to be able to help them, even when they are dieing.
    As was discussed above, talking to your patients and their families is the most important part of their end of life support. Most people are afraid to die, but when you engage with them and show them your support, they trust you, and listen to your recommendation.It has to come from the most responsible physician in the team that was involved in the patient’s care the most, to help with the bond and the mutual trust.
    I keep an open, honest, and supportive relation with my patients and their families. I start by asking them if they want to know their prognosis or if they want me to discuss it with their family. After their approval, I explain the prognosis and the expected events with and without the supportive care, and after a lengthy discussion, most of them will agree with my recommendation for better quality of care, but with avoiding any measures to prolong what ever left of their life (most times days or few weeks), and then I write it down and make it clear in the chart and communicate with the rest of the team. Most times we are able to continue there support at home, with palliative care or hospice support.
    I agree with keeping your patients inform and help them make their decision early on, to avoid the unnecessary efforts and medicare cost, but most importantly provide your patients with the best quality of end of life care.

  15. jayabhat123 Says:

    Thanks for the great post. Its a very interesting topic which needs to be addressed.
    I totally agree with others that it becomes hard for the family members to make decisions on behalf of their loved ones during the last days of their life. I think it would be a good idea to have educational awareness in schools and colleges to make public aware. This also will create less fear in their last days if they had imagined earlier and made appropriate decisions for those last moments when they are in sound mind. It is they who take decisions for their life during those last moments thus not making it trouble for their loved ones.
    Seeing the excessive health care expenditure being spent for the last days of life, it would be better to rethink and introduce new policies on these health care expenditures.
    Thanks again for the wonderful post.

  16. samreilley Says:

    This is such an interesting topic. I must say it is definitely a shocking statistic to hear that 25% of the Medicare budget is spent to cover the expenses of end of life care. This topic will be sure to cause lots of controversy as policies are made to chose when is enough enough in terms of healthcare.

    When you are in the circumstance with a loved one, you will do just about anything for a few more moments not thinking much about the cost. It is easy to see the numbers cut and dry now and want differently.

    I do think much can be done with end of life care education. If we can have it a part of the healthcare professionals discussion with their patients it would be interesting to see how the expenses change and it is it happens at all. With education alone, I think much can be done to aleve these end of life healthcare expenses.

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