Who is Responsible for Discussing End-of-Life Treatment Options?

[tnbutterfly - Mary]

Who is responsible for discussing end-of-life treatment options with the patient.......the physician? The nurse? In most instances it is the physician's responsibility to initiate discussion and determine a plan of treatment. But what if the patient is not given information on all the options? What if the nurse does not think the patient and family have been given adequate information or disagrees with the physician?

According to the ANA Code of Ethics, "The nurse's primary commitment is to the patient, whether an individual, family, group, or community." How does this come onto play with regard to end-of-life care? What happens when the desires of the patient are in conflict with the desires of the physician? Or what if the physician's plan of care seems more aggressive or unrealistic to the nurse in light of the patient's condition or prognosis?

One of the primary roles of the nurse is that of patient advocate. Nurses need to be prepared to advocate for the patient when conflicts arise between the patient's wishes and the wishes of the physician and/or family members. Although it is the physician who prescribes the plan of treatment, the nurse must be ready to assist the patient in exploring options for end-of-life care. No matter what setting you practice in--hospital, long-term care facility, clinic, or home--it is of utmost importance to address the patient's comfort needs as the patient sees them. This is particularly true in providing quality end-of-life care, allowing the patient to prepare for and face death on his or her own terms.

For other articles by this author, go to Body, Mind, and Soul

[tnbutterfly - Mary, BSN]

Medic09 said:

Might there also be a role here for someone in spiritual care - chaplain, the patient's spiritual guide (minister or whatever). For some individuals and cultures, this gets to be a point where there are some moral or religious choices to be made. It seems to me that is one of the things the nurse needs to offer, as well as educating the family and patient concerning the pragmatic options.

Exactly.......spiritual care is always an important part of patient care, and even moreso when discussing end-of-life treatment. As care turns to palliative rather than curative, it is very important to assess the spiritual needs because this can be a time of spiritual crisis.

[SharonH, RN]

End of life care-wishes-beliefs discussion should be initiated at admission and the nurse need not wait until the physician initiates it. If it wasn't done on admission and there is a change in the patient's condition or prognosis, I have no problem asking the patient or family member what they believe about their condition, how they feel about it and what are their plans to proceeed. It is your responsibility really and 99 times out of a 100 they WANT to discuss it. As others here have already observed, physicians often do a very poor job discussing these issues with patients.

[tnbutterfly - Mary, BSN]

SharonH, I agree....ideally end-of -life care discussions should be initiated upon admission. In many cases this may merely be a question such as "Do you have a living will?" or "Do you have advanced directives?". But there are times when even this does not happen, or there may be a failure to document the presence of a living will or advanced directives.

If the patient's condition deteriorates, it could complicate matters if there is not a living will or advanced directives. That is when the patient/family really needs a nurse who is ready to step in as a advocate and educator. Patients and families trust their nurses to guide them through the dying process and look to them to be their advocates when they cannot do so for themselves.

[Eishouse]

Re: Who is responsible for discussing End-of-Life Treatment Options

My most difficult experience with this situation was not one I could handle as a nurse, although there have been many times I would discuss with the family, then discuss with the doctor, then back to family, back to doctor, until they were able to come to an understanding. My father was the patient, his doctor, just a few years younger, had put him on his first blood pressure medication decades ago, and had see him through meningitis, a few broken bones, and all the ravages of heart disease. As I was the medical professional in the family, my dad would tell me what he wanted and expect me to deal with it. My mother, in the early stages of Alzheimer's Disease, wanted everything done for him; she wasn't prepared to give him up without a fight. The doctor, who saw my dad as one of the patients who had stood by him since he started practicing medicine, just knew that dad would rally and we would not have to talk about this. My father, wise man that he was, refused to go to the hospital again. He died in his sleep, in his own bed, in his favorite pajamas. That's what he wanted. I wish I could claim credit for making it happen like that. I do have the satisfaction of knowing he got what he wanted. I believe there's a special place in heaven for people who have died peacefully in their own beds, almost like they had completed their earthly projects, so could rest until they died.

[gargoyleox]

Discussing end of life treatment options is always a very sensitive topic to approach. I'm currently a licensed clinical social worker who is making the transition to nursing. I've worked in a variety of settings, but most recently in skilled nursing, and in most cases a discussion on Advanced Directives are always part of the admission process. These are usually discussed with the patient (if possible), a family member, guardian, or maybe someone who has Power of Attorney for Health Care for that patient.

In addition, we all know that medical conditions can change on a dime, and in such cases the physician should be the one to initiate the topic with the patient or person making medical decisions. I've seen some good and bad physicians address this in the past, and have say, they're not clinicians (in a therapeutic sense). In my experience, the situation is usually referred to the social worker to provide counseling or even make appropriate referrals to Hospice, home health, mental health counseling, etc.

Ultimately, I firmly believe that if the patient is cognitively able to make these decisions themselves, then they should be given every opportunity or right to do so. Education and proper information to make good decisions is key. We're all here to advocate for our patients and instill dignity and respect. It's all about making end of life as comfortable as possible (easier said than done sometimes, I know!).

[canoehead, BSN, RN]

I've known doctors that will get on a right good tear if we even suggest to the family that things are not coming out as we'd hoped. In some cases you have the poor patient as a science experiment for a week and the family still convinced that they'll pull out of it and go back to their normal selves. A healthy 85yo does not live in bed for a week and then get up and walk. And then the ravages of illness on top of that...if they get out of the hospital at all they are above average.

[tewdles, RN]

In my experience, the folks who are not getting "the talk" are the people who do not go to nursing facilities, those who manage their chronic, life-limiting illness over time with a PCP. Those people who end up in the hospital with a "suddenly" very limited life span. The fault is 100% at the feet of the health care providers. The PCP is the leader of the traditional medicine team and as pointed out in an earlier post, directs the Plan of Care. However, the professional nurse is STILL required to provide a comprehensive nursing assessment and that assessment should reveal need for dissemination of that end of life information. Anyone who has a chronic life limiting disease that has not been given information on subjects like DNR, advanced directives, hospice, etc have a KNOWLEDGE DEFICIT that deserves a nursing process. If the spouse or family is in denial about the patient's prognosis there could be INEFFECTIVE FAMILY or INDIVIDUAL COPING, there could be SPIRITUAL DISTRESS, IMPAIRED ADJUSTMENT. Any of these findings should be documented in the nursing notes including how this was discussed with the "team" and what the plan is to address that nrsg diagnosis. As professional nurses we CAN positively impact this important area, it falls right into the middle our nursing process. It is a good reminder that we have an important role in the continuum of care. It is an example of how the nursing assessment differs from the medical assessment and how the findings of that assessment ARE extremely important to the quality of health care received by the public.

[homedoc]

Who is responsible for discussing end-of-life treatment options?

The patient and family must first know that they are dealing with an end-of-life situation before they can begin to discuss end-of-life treatment options. The physician is in the best position and (in an ideal world) should initiate a sensitive and delicate discussion regarding prognosis. Unfortunately, in the real world, physicians have lost the art of prognostication, are uncomfortable with talking about dying and often feel like failures if they do not comply with the "Hippocratic Oath"--that "our sole purpose in medicine is to cure." Physician training is sadly lacking in this area.

I agree that the ideal approach is by a coordinated plan by all members of the healthcare team (nurses, physicians, social workers and chaplains, if available.) This team approach can address the total needs of the patient/family; i.e. physical, emotional, psychosocial and spiritual needs. Patients and families deserve to be able to make the best informed decision regarding their options.

I greatly admire and commend nurses who step in with their compassionate wisdom, experience and support to the patient and families, especially when the physician has failed to have a realistic discussion with them.

One option is also to consult a hospice team to help with communicating and counseling the patient/family.

Thank you nurses for helping us with this difficult communication,

God Bless, homedoc

[lamazeteacher]

It was nice to see that the doctor has joined us in our concern for dying patients and their families. The team approach has proven to be best for all involved in the end of life processes. No two situations are the same, so improvisation is necessary when dealing with all the people involved, with the patient as most important.

I like to use Elizabeth Kubler Ross's "stages toward acceptance of dying". It's unrealistic to expect everyone (including staff members), to be on the same step. We all have personal considerations and often not enough time to get in sync with everyone else. However all too often staff want to squeeze the patient and their family members onto the same step we're on. Wrong!

Whatever step everyone's on, (and some seem like they'll never reach

acceptance), is OK for them. They'll eventually get where they're going, once the process is explained to them. Nurses can acknowledge their accomplishments with recognition such as, "Well, sadness is the step after shock and denial, good work! You can expect some anger to come along, any time now, along with going back and forth with anger-sadness."

Patients and their families may possibly never been as close to death as the circumstances with which they're confronted, and appreciate knowing that you have been with many people at that stage of their lives (but do keep "war stories" out of your conversation with them). Their experience needs to be unique for them, special to this patient. They don't need to think that what they're going through may be repeated to others. Comparisons just aren't appropriate.

I've taught many workshops for nurses about "Death and Dying", since Dr. Kubler-Ross's books came out in the mid '60s, when I was the Inservice Coordinator at an acute care hospital in San Francisco. That started when it was reported to me that a favorite doctor dying on a unit at the hospital,

lacked nursing care. The nurses were having trouble saying good-by, and there was general avoidance among other doctors, too.

So we met at shift change to discuss what things he needed, and how those

needs could be met, and have the caregivers share their sadness in a sensitive, knowledgable way. Dr. Kubler-Ross's photographic essay book, "To live until we die" was read aloud at that and many followup sessions. It was a break through that allowed the nurses to express their emotions at work. We had been taught never to sit on a patient's bed, cry with patients/family members and project only our nurse "personna".

There have been many other positive changes since then, and more humane deaths, many at patients' own homes after preparation for recognition of s/s of it, given the patient and family members of their choice. Hospice came into being, with many growth pains, which brought us to a much better experience in America, of the ways of dying.

I just wish the costs of caskets, etc. would come down so families have less debt afterward. In nursing there are many instances of tragico-comedy. I passed a garage sale several years ago where teens were cavorting around, break dancing, performing acrobatic stunts along with a sign proclaiming, "Funeral Garage Sale". That was a moment in time for me, of the American reality demonstrating how advantage is taken of vulnerable families, and how some innovative kids confronted that. :rckn:

[asfreeasabird]

Most of the time I have talked with family they already know time is nearing. I talk with them about goals. Sometimes families don't want to sign up for hospice because they can't bring their loved one into the hospital. I tell them it is about accomplishing their goals. The goal of hospice is to keep the patient comfortable in their own home, but if that cannot be accomplished we do have a hospice respite room they can be admitted to if they need to. If I am not sure what the physician has told the patient I ask them. There was one patient the physician was at his wits end he thought it was time for hospice but the patient wasn't ready. I told him to have a care conference with the doctor, the family, and the discharge planner. The discharge planner is able to coordinate visits from hospice nurses to allow the family to interview. It is a collaborative effort for end of life care since it is such a big decision.

[carolmaccas66, BSN, RN]

Easy 2 word answer:

The Doctor (in conjunction with patient, and/or family/guardian or POA).

Simple.

[nurseprnRN, BSN, RN]

I can't tell you how many times after the physician has left the room I have had patients and families say something like, "I don't have to do that (long involved tx plan), do I?" and I always said, "Of course not, it's entirely up to you. What would you rather do? What have you heard about hospice?" and then I could answer their questions, correct their misconceptions, and offer to have our favorite hospice liaison nurse come in to say hi. I can't think of more than once or twice that people said, "Not now." when it's presented as a choice, most people at least want to know about it.

See, a lot of physicians and nurses think that offering hospice care means "Giving up hope." not at all. Sometimes we can't hope for cure, but we can always hope for comfort, for happy times, for symptom relief, for being at home, for our families to be cared for after we're gone.

If someone thinks that only a physician can give this kind of information and hope, then, well, that's wrong; an ill person may not have the months it's gonna take the physician to come around to doing it. Physicians are usually so relieved that someone else, I.E., the nurse, has taken care of this part of the business for them; they are in the business of cure and their education is so often really lacking in end-of-life concepts, language, and vision. We can help them, too.