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End of Life Issues - Kate Payne
End of Life Issues - Kate Payne

Dying is a part of life and the last great mystery which we all share. How we care for those at the end of life speaks volumes about our ethical strengths and weaknesses. Even death represents an opportunity for growth and learning. What is required of organizations to promote best practice in end of life care? What skill set and knowledge is required of direct care providers to improve the dying experience? Kate is available to answer your questions.

Kate Payne, RN, JD

Kate Payne provides leadership for the hospital based ethics practice Saint Thomas Health Services in Nashville, Tennessee. As clinical ethicist she provides advice, education, and support to patients, families, and staff related to clinical and organization ethics issues. Kate directs the ethics consultation service, one of the busiest in the nation, with some 30-40 consults a month. Along with the ethics committee chair coordinates activities of the institutional ethics committee and promotes appropriate system wide responses to changing ethical demands including ongoing organizational compliance with JCAHO and related ethical mandates.

Kate is team leader for an ongoing improvement project dealing with care at the end of life both inside and outside the hospital walls. She is on the national advisory board for Americans for Better Care of the Dying (ABCD), Tennessee End of Life Partnership, and the Alive Hospice of Nashville ethics committee. Kate is a frequent speaker on end of life care issues and ethics both locally and nationally.

Kate brings a broad range of nursing experience to her role, including staff nurse, educator, consultant, manager and leader. Kate is part of the adjunct faculty for the University of Saint Francis' graduate program in health care administration. She is a guest lecturer at the schools of medicine and nursing at Vanderbilt University and the schools of nursing at Belmont University and Middle Tennessee State University in Tennessee. Kate received her BS in nursing from Rush University in Chicago in 1981 and a JD from Pepperdine School of Law in Malibu, California in 1989. From 1993-1994 she was a fellow at the MacLean Center for Clinical Medical Ethics, Pritzker School of Medicine, University of Chicago, becoming part of the clinical faculty at the conclusion of the fellowship.


Is it difficult for some organizations, like some people, to deal with end-of-life issues?

I can see from personal experience that hospitals need to be aware that people have to have support during these times, both patient and family. How well do you think the nation's hospitals, as a whole, do in this area?

What are some improvements you'd like to see?


by Ingolfsson on March 6, 2000 8:57
A Anne Marie, first some general information since yours is the first question. Thanks! You are right that end of life issues are difficult for organizations. Organizations are made up of people and people are generally thought to be death denying, although a recent Institute of Medicine Report on the subject noted that research on such attitudes is limited. This report is available as the book "Approaching Death: Improving Care at the End of Life", National Academy Press, 1997. It is a great summary of research and polls and the literature which sums up the major influences and consequences on end of life care in the USA:

1) Actively interventionist medical profession - leading to high rates of surgery, tests and procedures when compared to other countries. This has translated into death moving out of the home and the realm of a natural occurrence, into the hospital. Several studies have pointed out that caregivers have actively ignored patient and family wishes (SUPPORT Principle Investigators. JAMA. 1995;274:1591-1598) and have delivered overly burdensome treatment even against their own consciences (Solomon et al. American Journal of Public Health. 1993;83(1):14-23).

2) The second major influence on death is a deeply ingrained American philosophy of individualism. While attention to individuals has reshaped the healthcare system into one that is more responsive to patient needs (trying to be), it has also led to problems such as ignoring family burden, a fear of many (Foreman. Boston Globe poll Oct.4, 1996). There are also tremendous concerns about medical futility, what works and what doesn't, who will die, etc. and a lot of this is tied to outcomes and evidence based medicine. Some if it is also tied to prognosis. If we knew that a person was more likely to die wouldnít it change our conversation? A new book by Chicago physician Nicholas Christakis entitled "Death Foretold: Prophecy and Prognosis in Medical Care" (University of Chicago Press, due out any day now) is about this very idea.

3) The third big influence on end of life care is our general unwillingness to accept limits like aging and death. In such a pluralistic society as ours itís hard to pick out one attitude, but mostly the attitude is a western one. Perhaps we can glean something from advertising about looking younger, or the average bookstore with hundreds of titles about being younger and the like. People often see death as an accident (Callahan. Western Journal of Medicine 1995;163(3):226-230). I think its more accurate to look at us as wanting everything our amazing technology has to offer, to make our lives healthy and active for as long as possible. Most accept death when its inevitable then we want that same technology to keep us from suffering.

So what can you do to make it different?

1) Talk about it. Forums at work at school at church. Healthcare organizations could do a lot just by offering opportunities to dialog. Pick a topic like advance directives (living wills and healthcare powers of attorney). This is also a big JCAHO topic so you get extra benefits if your staff is comfortable with these they can better help the patients. Use episodes of ER or Chicago Hope or the new show City of Angels (might not be the name?) as places to start conversation.

2) Instead of trying to predict what patients will die ask "Would you be surprised if this patient died in the next few months?" If the answer is no prioritize these patient's concerns about death. This can start in the physician or nurse practitioner's office. This can be a good quality improvement activity. Pick a defined group. Like patients over age 80 with advance directives, and work to improve the number, then go after a lower age group. Or pick a disease like patients with CHF with advance directives.
3) Measure pain as the 5th vital sign for all patients especially those near death (pain also a big JCAHO topic).

4) Expand your notion of pain to include anxiety, shortness of breath, agitation. Work to assess and change these things for dying patients.

5) Assess and manage psychological, social and spiritual or religious problems or symptoms. If you don't have in-house chaplains, form an alliance with local clergy to better support patientís spiritual needs for example.

6) Provide continuity of care both in geography and in direct caregivers. If a patient is likely to die in the next 24 hours try not to move them from a unit where the staff and family have all bonded. Try not to have more caregivers than you have shift changes if you can help it.

7) Provide palliative care that is focused on the relief of physical symptoms. Dying patients in pain need as much opioid analgesic as their symptoms require. There is no maximal dose. Policies and procedures should support this idea. Additionally Demerol (meperidine) is the one (almost the only one) opioid that has toxic metabolites and is contraindicated for chronic pain. It should be banished.

8) Do bereavement calls to the family. Families especially like to hear from the physician, a call or even a consoling visit. Even a card can make a tremendous impact. Many professionals attend funerals as part of this work.

9) This is extremely hard on caregivers. Direct care providers need praise and affirmation as well as bereavement care themselves. Even just talking with everyone available on a day a patient dies, just for a few minutes can help with grief issues which often lead to burn out (more accurately grief out). Encouraging conversation and forums for conversations or remembering is helpful.

10) Change the way you talk about these issues. When the decision is made to stop a life sustaining treatment don't say, "We are withdrawing care now." or "There is nothing more to be done". There is always something to do in terms of comfort care. It might be better to say "Its time to refocus our efforts on making your loved one comfortable and here is what I am going to do....or we are going to do..." or "This treatment is no longer helping...this treatment is lets refocus to comfort care...." Let them know what they can count one, what you will do, that you won't abandon them.

11) Recognize that anything you do will only benefit you! Since we are all going to die, improving the system helps us. For more information on what is working around the country check out the Last Acts and Americans for Better Care of the Dying web sites.
by Kate Payne on March 10, 2000 12:12

Q†2 Thanks for your answers, especially the references. That's great!!

When you said,

"10) Change the way you talk about these issues. When the decision is made to stop a life sustaining treatment don't say "We are withdrawing care now." or "There is nothing more to be done"...Let them know what they can count one, what you will do, that you won't abandon them."

I was very interested. My mother has recently had a severe heart attack, and after extensive tests, the doctors told her "There's no intervention that we can do, so we're sending you home." Privately I was told, and apparently my mother was not, that she has a 99% chance of a fatal heart attack in the next few months. I was struck by the obvious concern of the cardiologist, but also by his being very very uncomfortable about approaching the topic of death with his patient.

I think that the staff at the hospital where Mom was treated would REALLY benefit from the suggestions you noted, especially training in being able to talk about the issue. This can't be, I don't think, an isolated issue, or just one related to only one hospital.

Are there any plans for a JCAHO-produced lecture series or anything like that on the topic? Just wondering.

MTSU's Psychology Department has several courses that deal with aging and death/dying. Dr. Janet Belsky's books are very good on the topic of aging issues and end-of-life issues, and she teaches at MTSU.


by Ingolfsson on March 6, 2000 11:11
A Anne Marie, your experience with your mom is not too unusual. I'm going to answer your personal question here as its such an excellent example. What ideally should happen is a conversation with her about what she knows, what she doesnít know, AND if she wants to know anything at all. Not everyone wants to know everything. But given the statistic about a possible fatal heart attack you were told, she needs to be given the opportunity to plan, get things in order. Advance care planning is more than just making out a living will. It includes looking at any goals your mom might have, things left undone, people to talk to. Maybe writing letters to young children or yet to be born grandchildren. Maybe she would like to create a memory book with the family or as a gift to them. Maybe she would like to go to Vegas and bet a lot of money at the black jack table. The goal is try to help her do what she would want to do with the time left, to do what has meaning for her. Its a time for courage on your part and other family to ask tough questions and share things you always wanted to. So many people say after the loss of a loved one "I wish I would have saidÖ". You know her time may be shorter, this is an opportunity you all should take advantage of.

Additionally, medically speaking, what can be done to minimize uncomfortable symptoms and maximize function? For a person like her she must also decide if she would want to be resuscitated. Many states, Tennessee included, allow a person not to be when they are out of the hospital if that is their wish. If that isn't her wish a serious and compassionate conversation about the extent of life sustaining treatment she would want based on her condition needs to happen. To have this conversation the patient, your mom, really needs medical information from her physician about what she can expect as do you and the other family. I often find the family and patient have to give the physician "permission" to tell the hard news. The old school says don't tell the patient the bad news they loose hope. I believe, and my experience is primarily that truth well delivered gives the possibility of new hope for good end of life planning and doing those other things mentioned above. Patients with life-threatening illness loose hope from being abandoned, having uncontrolled pain and other symptoms, and loosing control of making decisions or not really being a person.

Many of the various studies about end of life care bear this out. One of my favorites is from Supportive Care of the Dying: A Coalition for Compassionate Care (SCD:CCC) Their executive summary entittled "Living and Healing During Life-Threatening Illness" from June 1997 is one of the first focus group style studies to talk with dying people and their families and care givers about what is needed. Much of their work is available on the Catholic Health Association website. SCD:CCC is a coalition of the major Catholic providers. They have a most marvelous video on the report and a wonderful newsletter called Supportive Voice that showcases improvements and projects all around the country. They can be reached at: Supportive Care of the Dying c/o Providence Health System 4805 NE Glisan Street, 2E07 Portland, OR 97213

Another good reference on what quality end of life care should be, from the patient's perspective, is by Singer, Martin and Kelner, in JAMA, January 13, 1999;Vol 281, #2 pp 163-168. 5 domains were identified including: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. Any one of these areas could be a focus of efforts.

There is a new report developed in conjunction with JCAHO and adopted by 13 specialty medical societies, that lists core principles for end of life care. (Principles for Care of Patients at the End-of-Life: An Emerging Consensus among the Specialties of Medicine, published by the MilBank Memorial Fund) Any of these could be ideas on which to build programs, practice standards, quality improvement projects. A way to see how your organization measures up.

The 11 core principles are:
1) respecting the dignity of both patient and caregivers
2) being sensitive to and respectful of the patient's and family's wishes
3) using the most appropriate measures that are consistent with patient choices
4) encompassing alleviation of pain and other physical symptoms
5) assessing and managing psychological, social, and spiritual/religious problems
6) offering continuity--the patient should continue to be cared for, if so desired, by his or her primary care and specialist providers
7) providing access to any therapy that may realistically be expected to improve the patient's quality of life, including alternative or nontraditional treatments
8) providing access to palliative care and hospice care
9) respecting the right to refuse treatment
10) respecting the physician's professional responsibility to discontinue some treatments when appropriate, with consideration for both patient and family preferences
11) promoting clinical evidence-based research on providing care at the end of life.
by Kate Payne on March 10, 2000 01:36

Q†3 Besides the use of Advance Directives to designate an agent to make healthcare decisions for patients when they are unable to speak for themselves, reframing the necessary communication and designation of a healthcare proxy as a responsibility (as well as a right)and encouraging value clarification about end of life quality of care and quality of life preferences,
what would you recommend to facilitate proactive intergenerational planning and communication about future healthcare decisions.

I understand that over 70%of those who die in America now make decisions to withhold/withdraw treatment or have those decisions made for them. According to Last Acts/NHO studies, we are asking our families/proxies to make important decisions with little or no prior communication or information.

by alowney on March 7, 2000 7:25
A Thanks for the question. Sorry for the delay in responding. The answer to this issue is communication combined with preparing people for the end of life. This is not just for the patient and family but also for the healthcare team.

In general people tend to express positive attitudes toward advance directives (ADs) but seldom complete them. All sorts of ways have been tried with only modest gains. Best estimates are 5-10% of patients has them. Gunderson Lutheran in Madison, WI has a success rate of 85%. Much of that success comes from the fact that itís a more unified health care system with unified medical records. Their success is also from creating opportunities to talk about advance care planning issues. They use posters, lots of ongoing education for patients and providers. There is just a lot of opportunity for conversation about the topic.

Conversation is key, even more than the paperwork. Just talking about the possibility of death is the first step, confronting mortality. Recent studies about why people do or don't complete directives focuses more on the process and what happens on the way to completing the paperwork. What is gained from such conversations is preparation for death. Facing it, achieving a sense of control and strengthening relationships with family and friends. People facing life threatening illness talk about their concern for their family. Having the family involved in such discussions helped unburden them and establish control through knowing limits, knowing the loved one's wishes. They used the conversation as a way to bridge that gap in prior communication you referenced from Last Acts.

What should you do? Start the conversation; open the door with the AD form. It is probably these psychosocial goals of advance care planning that account for the reason people don't fill out the ADs. This is hard work. Plus if you accomplish these goals you may not feel like you need the paperwork. More research is needed but this is an area to focus on. How can we help people work on strengthening relationships with loved ones and lessening burdens? How do we help them have comfort and a sense of control, how will we help with symptoms and not prolong dying? We have to ask them what they need.

Last spring, St. Mary's Health System in Knoxville, TN sponsored a community forum called "Before We DieÖMedical Decisions and Personal Choices". 350 regular people spent half a Saturday talking with a panel about this very issue. The planned discussion was scrapped for a continuous stream of questions from the audience for most of the 4 hours. If there is a lesson here its that people want to talk about this. There were physicians, nurses, ethicists, clergy, administrators, and legislators on the panel. Provide a forum. It doesn't have to be a big thing. It could be at a church or a temple in lieu of scripture on day. Sometimes the conversation goes better with your personal clergy there and people from your faith, or those you are close to.

The companion piece is the providers. Doctors, nurses, social work, everyone. All of the above applies to them too. They need to do this for themselves but also in the context of their relationship to the patient. There is a psychological goal here in strengthening the doctor/patient relationship through this same conversation. The strength comes from making this happen for the patient and family. How can you know what to confront if you don't ask your physician about the limits and possibilities of your illness? AD forms are tools to help with decision making and discussion. Healthcare professionals should be a support in the process. The real action however is between individuals and their loved ones. Just simple conversation could go a long way in improving this picture.

For more in formation consider these papers:
Martin, Thiel, Singer. A New Model of Advance Care Planning. Archives of Internal Medicine. 1999; Vol 159: pp 86-92
Singer, Martin, Kelner. Quality End-of-Life Care. JAMA. 1999; Vol 281: pp 163-168.

by Kate Payne on March 10, 2000 02:05

Q†4I know that the question posed by Anne Marie was about hospital care, but I would like to make sure that she and her mother consider hospice services if the cardiologist is saying the chances are high she will have a fatal heart attack over the next few months and there are clinical criteria to support that conclusion. Assuming her mother's physician to be right and assuming Anne Marie believes she and her mother would benefit from anticipatory support, an information gathering call to hospice might be appropriate. Some hospice programs will provide good counsel about how to best communicate with a physician who is uncomfortable approaching the topic of death with a patient. The physician's "discomfort" should not take precedence over the needs of a patient and their family.

Perhaps Anne Marie, like many others, believe hospice is just for cancer patients (it's not) or it's really just for the last days of life (benefits to patient and family are greater when services are provided for 2-3 months rather than 2 days or 2 weeks.) Navigating a course through the experience of a terminal illness often requires daily, nightly and specialized emergency support...not just access to good articles or websites, though I think your suggestions were excellent. Good hospices do what you have just done Kate: provide coaching for the myriad questions that arise once someone in the family acknowledges they need to figure out hows to best adapt to an imminent, and difficult, situation. Good hospices also do more than solve problems; with time, they can help patients and families derive meaning and growth from the experience they face. Best wishes to you and your mother Anne Marie.

True Ryndes

by TRyndes on March 8, 2000 12:00
A I could not have said it better myself. Many in hospice care for patients with life threatening illnesses other than cancer. They are finding that the patient's quality of life can be greatly improved.

I think we forget sometimes that we could just pick up the phone and call a hospice or other provider to see if that would help our loved one. Excellent advice from True!!

by Kate Payne on March 10, 2000 02:11

Q†5In recent years approximately 500,000 people per year (of approximately 2.3 million who die each year from sudden and anticipated deaths)receive hospice care. While the number is steadily growing, hospice median lengths of stay have been dramatically dropping, some as low as 7,10 and 14 days.

Kate, what do you think hospices need to do to build on their competency base, now decades in the making, and provide expert care to more people in need? Have hospices too narrowly defined the population they serve? Does it require the people who could benefit from hospice care to make a big developmental leap before they seek the care they need?

True Ryndes

by TRyndeson March 8, 2000
A Very interesting way to put it: Have hospices too narrowly defined the population they serve? My short answer is yes but its not just hospice that is responsible for this. Really all of health care is. We put boxes around bits of health care. We create territories. Hospice needs to take a leadership role since they have the expertise.

Several things need to happen. I am speaking from my acute care experience too and the needs I see. We need to center our end of life interventions on the PATIENT!! What the patient needs, based on his/her disease, more specifically their symptoms. Artificial limits like the 6-month rule for getting hospice should be banished. The only goal should be to help the dying person live better with their disease. Some of this can be done by hospice some by acute care some by long term care and for some there may be new structures that need to be created. There also needs to be a better way to deliver whatever kind of care that is needed in the home.

Consequently acute care folks need to be able to identify those patients sooner and access the proper services through care coordinators, social workers whatever mechanism your organization has. The NHO criteria are very helpful to me to identify such patients who would benefit from hospice.

At the same time insurers, HMOs, Medicare, Medicaid need to change the rules to access these services. Focused on what works, what doesn't, based on symptoms or criteria. The reimbursement must be there to extend the expertise of hospice.

I would like to see CEOs from the Fortune 500 set a precedent by renegotiating their employee benefits with a serious hospice benefit. "Will my employees be able to die at home with hospice? If not we go with another carrier" Could be hundreds of covered lives.

Providers need to be more forthright about prognosis and the chance that the patient might die. Thinking must shift from death as a failure to death as an opportunity and a piece of good care. We need to change how we educate our professionals to do this. Along with that is the leap you mentioned for the patient who could benefit. The patient has to shift in their thinking too. That development is tied up in facing mortality and courage to ask the questions and give the answers.

I wish we had better alliances with hospice on the acute care and the long-term care side. It would allow for more opportunities for dialog and building on our own competencies with some of theirs. I would also like to see more palliative care programs. Something between hospital and hospice for those before the "6 month mark" so to speak. CHF, COPD, AIDs, the chronic conditions that will shorten life. All would benefit from the hospice like focus on symptoms.

I think it should be required for all that care for patients that they have continuing education on palliative care. Just an hour or two each year. Maybe the way to get at this is with the state licensing boards. Or through the big systems. "You can't work for our national healthcare system unless you re-certify each year." Its could be good advertising. Come to our system our doctors and nurses are certified in palliative care, should that ever be your need. From birth to death, we are there for you with quality care.

Itís a wish list

by Kate Payne on March 10, 2000 02:14

Q†6 Hello Kate! Having gone through this experience personally twice in the last 4 months I was struck by how unsure I was going through this process with my own family. As a nurse I have several years of ICU experience working with patients and families through this process. However, when it was my turn I found myself second guessing decisions and overlooking obvious signs that I would not have missed otherwise.

Is there any literature that speaks to situations when the healthcare giver becomes the family member that discusses what others have gone through? I am afraid we just assume because the family member is a nurse, doctor, therapist, etc. that they will be fine. I think if anything they have additional needs that are just not addressed. What are your thoughts?

by yvette on March 8, 2000 12:26
A I think we always need to treat any family as family, no matter what they do. Sure medical people have other knowledge but they have, we all have, the same needs and we look to our healthcare providers to help guide us. Those that work in end of life care must refine their skills to be able to give all the usual information, ask the usual questions, give the usual and so necessary assurances without making professionals feel like you are talking down to them. You, the family, have to have some trust too. For the provider you have to work harder to build that trust.

There are lots of great think pieces about being a doctor or the family member of a physician or nurse, none of which I have at my fingertips. They all have in common the idea that it is often a liability to be a healthcare professional as providers assume you know things. If you are someone famous or with some sort of reputation or the spouse of such a person it can be even more difficult. Look for articles that start with "When the patient is a doctor...." A little different spin is the literature about the wounded healer. How our personal hurts effect how we care for sick people.

To me it says providers have to be vigilant that things aren't slipping through the cracks by asking and offering what is needed to best care for the patient. Always communication, continuity, compassion, a shoulder. Basic human interaction - we all hunger for it. Itís worth an attending MD or nurse manager having a dialog with a team about how to handle this patient's special needs, in the form of being a medical person or family that is. As a family member itís worth having a friend or colleague help you stay on track, keeping you grounded by conversation.

by Kate Payne on March 10, 2000 02:31

Q†7 Thank you very much, I appreciate the information and the best wishes, True Ryndes. I will indeed check to see where the nearest hospice is to my parents (they're in Maine), and talk with them.

This has been a very informative and helpful forum discussion! Professionally as well as personally. Thanks again for great questions and great answers. And the support.

Anne Marie

by Ingolfsson on March 8, 2000 12:48
A Anne Marie and I have been talking about her story over e-mail. I thought it would be important to say thanks to her and everyone for sharing their personal stories. Everyone is effected by end of life issues, which is why it is so important to work to change the system for our loved ones and us. It should be a source of power as well to help promote change.

Remember you can always pick up the phone or go to a web site to get answers if you think there is something missing from the care you or others are receiving. Especially with diseases other than cancer we often don't think about hospice for assistance. It is a niche that needs to be filled with services and reimbursement structures all the usual stuff to make it work for the patient.
by Kate Payne on March 10, 2000 02:44

Q†8 Ms. Payne:

After reading Anne Marie's question, I was particularly interested in the fact that her mother's doctor informed *her*, rather than her mother, about the chances of her mother having a fatal heart attack. Although the doctor might be apprehensive about talking about "death issues" with his patient, it seems to me that a patient is entitled to the truth about his or her condition and it is the health care professional who should be the one to tell the patient, rather than the family member. It seems paternalistic not to deal with the patient directly.

So, I suppose my question is, are there any circumstances under which health professionals are morally permitted to engage in paternalism? If so, then how are the boundaries of morally permissible paternalistic intervention to be determined?

Lynette Whitfield

by Artemis on March 8, 2000 2:30
A This is a hard question to answer. It is a "shades of gray" kind of question. Itís also one of the most common ethical issues. Paternalism refers to the judgement of ignoring a person's wishes or the fact that a duty is owed to them in order to benefit them. In such cases two ethical principles conflict, (1) respecting a person's autonomy and (2) beneficence (doing good). You make the judgement that beneficence takes precedent over autonomy. In this case we would be assuming that the physician ignored his or her duty to tell the patient about the chance of heart attack to confer some benefit on her. Perhaps to not scare her, or make her sad, or loose hope. Again these are all my assumptions. Anytime one is disclosing information the first assessment is what does the patient know and what do they want to know. Then are there any special concerns.

Research shows over and over, that patients want information from their physicians. It has also been unable to document harm from truth telling. For those facing life ending illnesses, what makes them loose hope is fear of dying alone, dying in uncontrollable pain or distress, and dying out of control of being a person or not being able to make decisions. These same things show up in the people who sought assistance from Jack Kervorkian. For more on this you might look at the work of Kay Herth about how to foster hope in terminally ill people. (Journal of Advance Nursing 1990;15:1250. She also has a book with some other authors)

There are some situations when paternalism might be ethically justified.

In an emergency, information may need to be curtailed in order to save a life. Time is the killer here.

If a doctor could show or believed that telling the truth would so seriously upset the patient that they might harm themselves or others. There would have to be really CLEAR FACTS to support this. Like a history of mental illness, suicide attempts, violence.

Less ethically clear would be that a patient with a life threatening but curable condition would refuse the procedure. There would have to be facts that the refusal is inconsistent with prior wishes or life values of the patient. Depression is always a concern in such cases. Physical problems that effect decision-making must also be looked for.

Besides these kind of paternalistic situations there is also a more beneficent kind of paternalism that should sometimes be encouraged. Where a physician says to an obviously overwhelmed family "itís time to stop this aggressive treatment and focus on comfort. We aren't going to restart your loved one's heart if it stops. Itís time for you all to be at the bedside if you so desire. Its time to carry out his last wishesÖ" Something like this. The goal is not to make the family have to make decisions Ė they don't know how to when the patient is obviously dying. The same applies for cases of physiologic futility. The worst question is "What do you want me to do if his heart stops?" As if asking it implies there is an answer that the family has in the midst of grief and loss about what is going on. More information and guidance is required on the part of the healthcare professionals.

by Kate Payne on March 10, 2000 02:57

Q†9 Six weeks ago, my mother died. Mom had a severe MI almost ten years ago and beat the odds by surviving and actually having a good quality of life until the last few months. During that time she and my dad developed a close bond with her doctor who is also my dad's doctor. Her death was probably close to ideal. She had another MI. Advance directives were in place, my brothers, dad and I were all with her and arrived in time to talk with her before she became unresponsive. When it became apparent that Mom wasn't going to recover and she was having pain because the MI was extending, agressive treatment changed focus to comfort measures and Mom was able to die free of pain listening to some of her favorite scriptures surounded by love. All this said, the missing person in this scene was her doctor. He is a very busy, overworked, cardiologist that works in association with five other doctors and he is also a father of young children. When Mom was admitted an associate was on call and took good care of her and continued to care for her for 7 days until she died. She received excellent care, but several times she said, "I don't think I am going to make it and I don't understand why Dr.---- doesn't come to see me". She understood it was the other DR.'s turn to care for her but she wanted to see HER Dr. one more time. Two weeks after her death, Dad said he thought it strange that he had not heard from their Dr. One short phone call to Mom would have allowed her to thank him for his care and she would not have wondered why he had no contact with her in her final days and a call to Dad would have said that he still cared and was concerned for Dad in his grief. I guess the question is where is the line drawn? There are turf questions for the DRs and also the question of selfcare for her Dr.

by danno on March 9, 2000 12:13
A Thank you for sharing your personal story as others have done. It is good to hear that death can be an experience like the one you described, though not totally ideal. The issue you bring up is one of continuity and self care. Perhaps itís evolutionary. Your momís cardiologist and the whole practice sounds like a very high quality group for end of life care. They knew when to say enough, to refocus to comfort. There was a good doctor/patient and spouse of patient relationship, a big piece of healing. I hope that relationship continues.

It seems to me the next step in the evolution is dialoging with acute care and primary care folks, about what their role is at the end in terms of continuity. It should be more than just carrying through with the plan as the physician colleague did (which is of course very admirable and desired). We need to start teaching that a simple note or phone call can make a huge difference. It requires that you get involved with your patients and their lives. BUT not over involved. As you observed a 5-10 minute phone call to your mom was very desired. Something like, "Iím sorry I canít be there. You are in good hands with Dr. _____. I am thinking of you and your family. I will try to drop by." Even if he didnít drop by it is the sentiment that counts.

Unfortunately our health education system and professional work environments often discourage involvement, thinking it unprofessional. What we need to develop are simple ways that recognize the demands of a busy cardiology or any practice and allow for that brief human interaction. On the acute care side it seems we donít think we have a role in this kind of care either, especially after death. Hospice isnít the only group that owns good bereavement care. Even a note or phone call after the fact would be good from the nurse or the chaplain.

Families can also help here by asking the physician to call. Recognizing they are busy but saying it would mean so much to mom to be able to tell you thanks. Saying exactly what you said above, mom wants to see HER doctor. Sometimes professionals need permission to step outside of the usual boundaries. And given all we have talked about this week, about how difficult death is for everyone sometimes we think we shouldnít intrude.
Over and over again in the health care journals are these beautiful little think pieces where physicians and nurses describe the patient they could never forget or what it was like to get a holiday card from a family, or why they go to funerals. I believe the caregivers need to do something like this to have closure especially with repeated grief and loss. The following might be of interest:

Empathy: A Challenge for Critical Care. American Journal of Critical Care. 1999, Vol. 8, pp. 204-206

"If I work hard(er), I will be loved." Roots of Physician Stress Explored. Journal of the American Medical Association. 1999, Vol. 282, pp. 13-14.

Seeking Forgiveness. Annals of Internal Medicine. 1999. Vol. 130, pp. 444-445.

by Kate Payne on March 10, 2000 03:03

Q†10 I think the whole question of doctors being a bit leery of dealing with their patients who are dying is part of being a doctor--especially the surgeon-type. If you can't intervene and save the patient, what do you do? It has to be extremely frustrating to realize in some cases there is nothing you can do, physically, for a person.

But there is a great deal a physician--a surgeon or any other kind of doctor--can do on the emotional level, and I think this is where more time needs to be spent in medical school and residence training sessions. Being empathetic, being involved to a degree--making the phone call, even if you're exhausted and you know you can't be there--that can make a HUGE difference for the patient and for the family.

Somehow we have to help doctors and other health care providers more comfortable with the "fuzzy" side of things. Speaking as a master's level psychologist, I know a lot of physicians who just don't know what to do when emotional topics come up. It's not in the manual; there's not a if-this-then-do-that decision tree available. You have to play it by your heart, and sometimes that's hard to do.

But the doctors I know who have made that step--who do manage to emotionally connect with their patients--seem to be much more able to provide great care, continuity of care, and deal with end-of-life issues. And I think it helps them to grow as people, too, since they also have personal issues with death and dying, as well as professional ones. "Doctors are people, too." Trite-sounding, but true. Some of these avoidance issues may be more related to personal issues than professional discomfort at not being able to intervene actively and "save" everyone.

by Ingolfsson on March 9, 2000 2:59
A Every thing Anne Marie has pointed out is true to my experience as well. I am involved in an ongoing quality improvement project dealing with the quality of death. We have been collecting data, making little changed here and there. Where we have found the most success is with more of a mentoring kind of approach. Its really more than that though. Let me give you several examples. For one physician the nurses on a given unit realized that he did better with end of life conversations if they brought a chair into the room. We donít exactly why it helps, maybe grounds him, or helps him to spend the time needed. It got to the point where he would remind the charge nurse to bring a chair. The point is that we need to learn what helps people to do this better and make it happen.

For another physician the ICU nurses and chaplains made it a point to share their frustrations as well as praise and affirmation for things that went well. Over a four month period we looked at advance care planning for his patients with life threatening conditions. Including ascertaining wishes, involving family, managing symptoms, making a plan, etc. Over four months he improved in the way he asked about wishes, getting pastoral care involved, talked about prognosis, possibility of death. The point of the collaborative conversation was to work on getting all these things in order, and having everyone be comfortable about the plan, making sure loose ends are tied up, family coming to grips, everything.

What we keep learning is that personal contact with our physicians makes a difference. Helping and offering help, offering support. One of the nurses on the ventilator unit makes it a point to talk with a doctor after having to give bad news. She always puts an arm around the doctor, makes sure the doctor is ok, a little nurturing---it goes a long way.
I always keep in mind than only a very few medical schools teach anything about this. I assume that everyone can use a little help and reassurance. It never hurts to ask and offer. Everyone needs help when the ultimate questions come up.It will be a slow change to help physicians realize that death is part of life and that there are things that medicine can do even at death.
by Kate Payne on March 10, 2000 03:39

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