Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

An interview with Kathy Carroll, BSN, RN

St. Vincent's Hospital and Health Services, which includes the 650-bed St. Vincent's Hospital and the 200-bed St. Vincent's Carmel Hospital, both located in Indianapolis, Indiana, has been involved in a nationwide effort to improve end-of-life care as part of Supportive Care of the Dying: A Coalition for Compassionate Care.¹ This coalition was begun in 1994 by Catholic health systems in Oregon in response to public outcry for legalized physician-assisted suicide. Since then this group has conducted nationwide focus groups of patients, bereaved family members, and professional caregivers to understand what is important in end-of-life care to these different stakeholders.²

As a result of their participation in this early focus group research staff at St. Vincent's Hospital and Health Services began to develop some new comprehensive holistic health care services including a Bereavement Care Track. This track offers next of kin of all those who died at either of these hospitals some free support services and referrals during the first year after death. In July 1997, Cathy Carroll, BSN, RN, initiated a pilot Bereavement Care Track in three units, (the intensive care unit (ICU), the cardiac recovery unit, and the oncology unit), and in 1998, expanded these services to a few more units at St. Vincent's Hospital.³ Now this service has expanded to cover the entire system, which has on average 88 deaths per month—of these, the majority occur at St. Vincent's Hospital, with only five to eight deaths per month occurring at Carmel Hospital. The Bereavement Care Track services are distinct from most in that a nurse and team of hospital staff volunteers (nurses and other professionals) make three phone calls to next of kin at three to four weeks, three to four months and six to seven months after death, respectively. During these calls volunteers inquire about family members' emotional and physical state and to offer support services. Similar to most bereavement services, they mail out a series of brochures at specific time points during the first year after the death. A separate bereavement program, the infant loss program, has been in place at St. Vincent's since 1983. Ms. Carroll serves as bereavement care coordinator in both programs and has used lessons learned in the infant program to roll out this new effort to provide more proactive bereavement support system-wide. In the following interview with Innovations associate editor Anna L. Romer, Ms. Carroll describes the design and implementation of this new program, as well as what the particular phone calls entail and what staff at St. Vincent's has learned from bereaved family members about this service. [Citation: Carroll K. Reaching out to bereaved family members: An interview with Kathy Carroll, by AL Romer, Innovations in End-of-Life Care, 2001;3(3), http://www.edc.org/lastacts]

What is the main goal of the Bereavement Care Track?

The main goal of this intervention is to provide a resource and a support through the grieving process to family members who have had a loved one die here.

Can you describe how you identify all the deaths in your system?

The deaths in our system are identified through the security department. As a body and the accompanying paperwork are brought to them, they enter the deaths into the computer system which feeds into my Access Program. So when I go to that program and enter the death database, the information I find is: The first and last name of the person who has died, the date of the death, the unit that the person was on, the next of kin and that person's address.

Who identified this next of kin?

We ask patients to name someone local as next of kin when they are admitted. It is not necessarily a spouse or blood relative. There have been many times that I've called the person listed as "next of kin" and that person has said, "You really need to call this person because I just happened to be the caregiver at the time and his daughter is in Texas. So you need to probably call her." And I do then call the daughter in Texas. I have made calls throughout the US, but I haven't called overseas yet.

Essential Elements of the Bereavement Care Track

Could you explain the role of the physician end-of-life committee in the design and implementation of this program?

Sister Sharon Richardt, Director of the St. Vincent Mission Services department, instigated the initial meeting to discuss the possible development of this program. The End-of-Life Committee, a physician-directed committee with members from throughout our institution, and of which Sister is a member, has overseen its development. The committee members continue to provide input and receive reports on every aspect of bereavement care. The bereavement task force, with members from Hospice, Pastoral Care and the Infant Loss Program, of which I am a member, designed the actual program. During the creation and pilot stages of this program the bereavement care coordinator was housed in our Mission Services department. Once this program became system-wide, the program "home" was transferred to St. Vincent Hospice. The hospice is part of our health system, providing hospice care to patients who qualify.

Tell me about the initial phone call that you make to these family members. Is it a surprise or anticipated?

If the next of kin has read the brochure the call wouldn't be a surprise; often, however, they haven't read that brochure, so it is. The "At the Time of Death" brochure, which the nurse or chaplain provides to the family when the patient dies, lays out the follow-up care that we provide, including the phone calls.

Do you know the details of death when you make the call?

No. At St. Vincent's Hospital, it's a cold call. Most of my volunteers are not comfortable enough to make the first phone call, when we don't know the cause of death. I've been doing these calls for so long that I no longer feel uncomfortable if a person says the death was a suicide. We deal with suicides because they come through our Emergency Department (ED). Patients who are dead-on-arrival come through the ED. Some attempted suicides arrive at the hospital still alive and then die. So, we are making calls to next of kin of all the deaths that occur or are dealt with in any way at the hospital.

St. Vincent Carmel is an acute care hospital with approximately 5-8 deaths per month. Chaplain Carey Landry, one of the two chaplains at St. Vincent Carmel Hospital, has done an excellent job leading the Bereavement Care Track program there. I send him the lists of all the patients who have died at Carmel and the initial phone call contact information. Chaplain Landry has recruited ten volunteers and he assigns them to do these initial phone calls as well as doing some himself. He knows who has died, and what they've died from, so he can give the volunteers a few more details. He then sends me back a list of who has been assigned to whom.

Structure & Content of Initial Call

How long do most of these calls last?

The first phone call can last up to ten minutes. Since the pilot in 1997, I have tracked how many minutes, on average, each call takes. For instance, in July of 2000, the average initial phone call lasted five minutes and 36 seconds. The average three-month phone call for that same month was four minutes and 38 seconds. I notice that they drop maybe a minute or two each time I call. I've tabulated the length of calls from the very beginning of the program because I thought it important to document how much time is involved. I attempt to call people twice. After the second call, I leave a message with my office phone number, if there is an answering machine. My phone has been, "rigged," so that my beeper always goes off when I have a voicemail. I'm constantly checking my voice mail.

What do you say in that first call?

In the first phone call, I say, "Hello, my name is Kathy Carroll and I am from the St. Vincent's Hospital in Indianapolis, I coordinate a program called 'Bereavement Care'." Now some people don't know what bereavement means, so I wait to hear what kind of reaction I get. If there's no reaction, I ask if the person understands what I mean—sometimes he or she will say "Yes" and sometimes "No." So, then I explain a little bit about what bereavement means.

Then I talk about this program, explaining that there is absolutely no cost to the family or partner for this program and there's no obligation on that person's part. Then, I explain what the program consists of, i.e., that it includes mailings and phone calls. I make sure that they understand they don't have to do anything with the mailings. I give them every option about what they would like to receive, or if they would prefer no contact at all. I provide a number to call if they have a question that comes up. For example, if a grandchild has a question about grief and they're not sure how to answer it, they can call us. I emphasize that our assistance is free, and we would love to be able to provide them with anything that they need. Currently, our support groups are free. In terms of individual counseling, it depends on what the individual needs. One of our Pastoral Care associates or I can meet once or twice with an individual for free. However, if the individual or family members are seeking more long-term counseling, we refer them to one of the grief counselors in the community.

How do you provide services to people in adjoining states?

The services remain the same to those family members living in adjoining states. When I make the initial phone call I always tell these folks that the first brochure refers only to support groups offered in the Indianapolis area, but that the rest of the brochures are educational in nature and can be applied to anyone, anywhere.

How the call evolves depends on the response. If the person appears talkative, I'll ask them about the loved one. I might say, "I know your wife died, and I'm very sorry about your loss. Can you tell me a little bit about what happened?" I just open the door. Some people shut the door really quickly. Most people are talkative, and they go into a lot of detail about what happened.

Then, there are a number of people who don't know what happened. They can't explain the death. I think that this is one way the calls can be truly helpful. Sometimes they'll have medical questions, and my nursing background does help. Some conditions I'm not familiar with because my own background is in labor, delivery, gynecology and oncology. If the deceased had open heart surgery and they use some terms that I don't know, then I usually refer them back to the physician. I'll tell them that they have a right to call the office and make an appointment. If they really don't understand it and it's important for them to understand more detail, they should feel free to call the office and set up an appointment with the physician.

Do you ever facilitate that yourself, or do you leave the follow up to them?

I encourage them to go back to the physicians. I see my role as primarily one of listening to families and coaching them a bit. On rare occasions, I do intercede and take action on the family's behalf.

Do families have questions about getting death certificates or autopsy results during the initial call?

Many families ask where the death certificate is. Getting a death certificate can take eight weeks. Unfortunately, families need the death certificate in order to access any insurance money or for any other paperwork to progress. This can be a real hardship for older folks. Sometimes there has been an error in completing the death certificate and so then it takes longer.

Are you able to speed that process up for them?

I know the process and can explain it to families. In general, funeral homes handle the death certificates. I suggest that families call the funeral home because the funeral home director is the spokesperson and advocate for the family. The director should let the physician's office know that the family needs the death certificate. I encourage families to let funeral directors know that not having the death certificate is a real problem. Funeral directors need to keep calling the physician's office to get the death certificate. If the families have not involved a funeral director, the death certificate stays on file at the hospital and can be requested directly by family members.

Autopsy results are never sent to the funeral director. The autopsy results are sent to the physician who ordered the autopsy. Some physicians are good about calling the family and explaining those results or inviting the family to come in for an appointment at the office to discuss them.

If families are having trouble getting or understanding autopsy results from the physician, another strategy I suggest is that they call their own primary care doctor, and make an appointment. The intercession of the next of kin's own doctor with the physician who has the autopsy results can be especially useful if the family member does not live here in town. The bereaved family member might say to his or her doctor, "I would like to come in and sit down—can you explain to me what happened to my husband? Can you call my husband's doctor and get the autopsy results?" The primary care doctor can be helpful even though he or she was not involved in the care of the deceased. As a medical person who knows the family member, he or she can explain the terms, and translate the autopsy results into lay person's rather than just having them sent to their home. It may be that doctors also respond well to requests from peers.

Are you connecting people with their own primary care teams? Is there an explicit component of this program to attend to the health of the bereaved?

If the person is open and we're conversing during the initial phone call, I usually ask about contact with his or her primary physician. I go into some of the details of what grief feels like, physically, because most people don't know that. People often don't know that grief may make them feel more tired, and/or may affect appetite and sleep. There are a number of physical symptoms of grief. Some people tell me that they had no idea that these physical symptoms were part of grief. It helps to normalize and validate this experience. So, I usually encourage them to go see their physician, have their annual checkup and keep in contact with their primary care physician.

What other kinds of issues, in that first phone call, do family members raise?

Some family members have financial questions about the next steps. Sometimes I direct them back to their own family members. I try to decipher which family member could be an asset to them; it may be a niece, a nephew, or a child. If I am speaking to an older lady who is confused about her finances, and she appears overwhelmed, "I've got these doctor bills," sometimes I can ascertain that they are not bills. I'll have the person open it up, and it might say at the bottom, "This is not a bill," but she hasn't even looked that far. But, I usually encourage the person to involve someone else in their financial considerations because it can get very confusing, especially when a person is in the throes of grief. Even when death is anticipated, grief at the loss of a loved one can be overwhelming.

Do you intercede on the family's behalf with the hospital billing department?

I try, but at the three to four-week mark, families usually don't even have a bill, yet.

As we go down the road with the phone calls, sometimes at the three-month call a family will be having trouble with the billing process. I will then call the director of billing here, and ask her to work with them.

Do you ask them an open-ended question in that first phone call about the quality of care they got when their relative died, or anything like that?

No. Nine months after the death, we send a questionnaire about quality of care to all of the next of kin we've been able to reach. We don't see the Bereavement Care Track as a quality improvement effort, per se, although I do handle questions and problems, and do follow up. The focus of these calls and written materials is on supporting the bereavement process of these family members. I don't want people to be afraid to talk to me because they're afraid that I'm going to report everything that I hear. I usually tell family members that I can contact unit directors if they wish, but otherwise, what they say is confidential.

Do you hear any anger about the care of the deceased?

I think I diffuse a lot of anger. Some people have complaints, and from the stories that they tell me, I would have complaints, too. I listen. I try not to be defensive at all because that's not going to help. Then, I make suggestions about how I might follow up. "Would you like for me to contact the nursing director, and have her talk to this specific person about the care that you received?" I give them control and let them know that I will follow through, and then I call them back and let them know what I've done.

For example, I had one lady complain about how dirty the lounge was on one of the units. So, I called the nursing director and told her that I had a real complaint about the cleanliness the lounge in her unit. I said, "Would you like to go look at your lounge, or do you want me to come over and just kind of glance at it? This lady had some specific complaints." The nursing director called me back two hours later and she said, "It's filthy! We have housekeeping up here right now taking care of everything!" Then I called the family member with the complaint back and told her what we had done. If people want to write a letter of complaint, I tell them exactly to whom they should write.

What percentage of calls require this level of responsiveness on your part, i.e., that you make a follow up call and then get back to the family?

I would estimate that about two out of the initial 80 calls we make at St. Vincent's each month require any type of follow up. We have not had to make any follow up phone calls for the families called from Carmel.

In terms of the different time points, the three month, four month call, or the six and seven month call, you said they tend to get shorter as time goes on. Are there any other ways in which the calls differ, over time?

At the three-month mark, I talk to them about their "fog." By fog, I mean a kind of the shock and numbness stage. I ask if it is clearing at all and if they notice anything different. I also ask if they are experiencing a "new normal." They've gone through the initial shock. Other people in their lives are starting to back away, probably. It's not that they don't care, but they are getting on with their lives. Most of the bereaved family members I speak to are older; they describe their adult children as busy. I ask them, "How are you grieving? Do you think your kids are okay?" Or, "Where are you as the family matriarch, or patriarch? How are you dealing with everything? Are your kids still being as supportive as they were? How are they doing that? Is there anything else that you feel that you need?" But, eventually, by the six-month phone call, we're talking about getting out, just a little bit. I ask how they are handling phone calls to go out to eat and if they are ready for social engagements yet. "What are you doing to activate your life again? Are you ready to do that yet?" It's fine if they are not. But, eventually, I assure them that they will get to that stage.

What other kinds of resources do you offer these bereaved families?

When we developed this program, we decided that it was not worthwhile to reinvent the wheel, so we refer the adults, the teens, and children into existing support groups led by our hospice. I also have a variety of community resources to which I can refer families: spouse support groups that are open-ended in duration, an excellent community-based children and teen center that works with people in grief. We refer families there because they also provide individual counseling. So, for example, if it's a young parent who has some children of grade-school age, and she needs some extra assistance, and is not sure how to do all this, she can take her children there. They can participate in a support group, while she can receive individual counseling. We have lists of individual counselors who specialize in grief and loss issues. We have an annual weekend retreat for grief called "Camp Healing Tree" for children, ages seven to seventeen. Staff from four hospitals in the community work together to prepare for and conduct this weekend retreat for bereaved children. Each child is paired with a bereavement volunteer for the weekend. We have an educational series for families about dealing with grief around the holidays.

We have another volunteer group here at the hospital, the senior partner program staffed by volunteers who are seniors themselves. On occasion I have put a couple of elderly bereaved family members in contact with this group, because they are isolated, have no relatives and want to receive calls daily. Members of the senior partner program will call and check on them or pray with them. They will do whatever the person wants. I've used the program about four or five times in the four years I've been running the Bereavement Care Track. So, we have a variety of activities and resources for bereaved friends and families.

How did this structure evolve from the pilot program?

Starting with a small pilot program has been essential to our success. In the pilot, the first phone call to bereaved family members was originally scheduled at three to four months after the death and we only made two calls. But we received feedback from families on the questionnaire we sent out, saying that that first call came too late. So, I shared those comments with members of the End-of-Life Committee and we decided to try calling bereaved family members three to four weeks after the death.

Originally, we mailed the satisfaction/quality improvement questionnaire three months after the death. Our response rate was terrible – only 8 percent of the approximately 88 next of kin we sent questionnaires to, responded—in other words, we received about seven questionnaires. Then, I talked to the hospice staff to find out how long after death they send out their satisfaction survey. We learned from their experience and began sending it out at the nine-month mark, and we now get a 16-24 percent response rate, in other words, we get back about 14-21 questionnaires.

Until we expanded the Bereavement Care Track to the entire system, I made all of the calls. Then, in July 2000, I teamed with pastoral care to recruit and build a volunteer corps of hospital staff—our goal has been to recruit staff from every unit, and we have been successful in 80 percent of our units. The involvement of the Pastoral Care department evolved simultaneously with the expansion of the program. We actually only had seven volunteers in place at St. Vincent's when we began to implement the program across the system. The recruitment and training is ongoing and continues to grow. We now have 43 volunteers across both hospital settings.

How did you recruit paid staff to volunteer additional time? Explain the role of pastoral care staff in this process.

Sister Sharon Richardt suggested that the Pastoral Care associates at both St. Vincent's Hospital and St. Vincent Carmel should do most of the follow up phone calls to families who had had a loved one die at the hospital. She presented this idea to the Pastoral Care director in July 2000. I didn't think this idea was feasible, given how many other tasks they handle. So, I went to the pastoral care department and we brainstormed together how to avoid their taking on an extra burden that they do not have staff to cover.

Together we came up with the idea of recruiting staff from all the units in the hospital to volunteer to do some calls. Each pastoral care person was to get in contact with me and either set up an in-service on the units he or she was identified with, or have unit meetings, to give a 10-minute talk on what bereavement care means, and how staff can volunteer for the program. We have been recruiting volunteers for a year now, and 80 percent of the units have some volunteers who work with me to make these follow up phone calls.

Are you conducting the calls for the deaths on the remaining 20 percent of the units?

Yes. Some units, our ICU, for example, have probably an average of 16–20 deaths a month. So, even the five volunteers in ICU can't keep up. The units that do not have any volunteers are those that have not yet been made aware of this opportunity—on these units, the pastoral care chaplain has not yet made arrangements for me to come and provide their unit associates with an in-service or information at their unit meeting.

What motivates paid staff to give extra time to volunteer in the bereavement program?

Service is one of our core values here at St. Vincent Hospital and I feel that many associates find this type of volunteer work personally rewarding. We have a program here at St. Vincent's called ACTS, or Associates Called To Serve. It's a group made up of anyone associated with St. Vincent's who volunteers, in any capacity. The program tracks how many hours associates contribute, as well as exactly what they are doing. Associates active in the ACTS Program can certainly include this information on their annual evaluation.

Is there an unwritten expectation that everyone will volunteer?

No, not really.

What makes them volunteer?

Part of the reason that they volunteer is the way we have presented the progam. I try to frame this activity as a way to stay connected with families with whom staff members have become involved. I feel it creates some closure for the professional caregivers, which is usually missing for them when a patient dies. This program allows the professional caregiver to call this family two or three times, and make sure that everybody's doing okay. I don't give any volunteer more than five phone calls a month, total.

The staff who choose to volunteer, especially those working in the Cardiac or Intensive Care Units, find it brings some real closure for themselves. They really have liked being able to stay in touch with these families. I had a nurse the other day who had to stop volunteering because of her involvement in a Master's degree program; she came up to me and said, "I just can't believe how much I've missed making those phone calls." Now that she's completed her program, she's asked to volunteer again.

Do you have a system for tracking all the calls?

Yes. I have a spreadsheet program that helps me track each volunteer and all the contacts that have been made. First, I track all the six-month calls, then all the three-month calls and then I know who is free to do any initial calls besides myself. I send out a form to each volunteer. Information about the deceased, the relationship of the next of kin, how old the person was that died, the gender, the name of the next of kin, and the phone number is all at the top of the form. The form also includes details of earlier phone contacts. For instance, if I'm asking a volunteer to make a six-month phone call, she can look back on this form to see what happened at the initial phone call, and during the three-month phone call.

I send out assignments each month. Some volunteers have told me that they will inform me when they have a family with whom they have worked, which they want to follow for bereavement care. So, some volunteers only work with families of patients who died on the particular unit they work on. At St. Vincent's Hospital, seven volunteers have requested to do one month, three-month and six-month phone calls. Those volunteers want to follow a family from the very beginning.

For what percentage of total deaths per month do you or a member of the volunteer corps actually complete the initial call?

I would estimate that we reach approximately 33 to 40 percent of the total pool with that first call—that means we speak to 26 to 32 family members. Even when we don't reach families initially, we try again at the three and six-month intervals.

Of the 26 - 32 family members that I or the volunteers actually speak with for the initial phone call, I would estimate that we reach approximately a quarter of them for the three and/or six month phone call. What this means in total numbers at St. Vincent's is that we reach about 6-8 of those family members for the second and third calls. Some of these elderly bereaved people leave home and stay with a child or loved one for a time following the death so they are hard to reach at home. In addition, many of the older folks go south for the winter so it depends on the time of year as to whether or not we reach people at home. There are some family members who are never home and do not have an answering machine, so we cannot reach them for any of the three phone calls.

Each month, I monitor whether a scheduled phone call was made and its outcome. After each contact, I also note for whether the family has requested no further phone calls or contact.

How do you track what happened on the call?

I ask volunteers to write a synopsis of the conversation and send it back to me, on a feedback form. It includes information about how the family feels that they're doing. For example, they note if everyone is sleeping and eating, if the family is, in fact, receiving the brochures, and if the family member wants to keep receiving written materials. Volunteers also note any particular actions they have taken, or if any family member is sick. When the volunteer or I call back the next time, we ask how that family member is doing.

Most volunteers don't have access to the database because of confidentiality. I have two volunteers dedicated to data entry who work with me three hours per week. Together we enter this information into the database.

Keeping the database up-to-date and tracking who has done what are both administrative pieces that are essential to the project. If I've sent one volunteer two sets of bereavement calls, and I haven't heard back from her for two months, I need to call her, and ask what's going on. Sometimes volunteers are afraid to admit that they are behind on their calls. If it isn't working, I ask them to send the forms back to me

How do you train these volunteers?

We have a three-hour training. I review what they can anticipate hearing people talk about, and explain the importance of these phone calls. The protocols for the initial, three-month, and six-month phone calls are in the manual that they receive, as well as the policies and procedures we have developed for bereavement care here. I review common needs and helping strategies, some common myths about grief and loss and some of the physical and emotional symptoms of grief. We also offer some tips for the evaluation and assessment of risk of suicide, or possible indicators that the family member is experiencing a more severe problem, in addition to grief. I encourage volunteers to refer a family member back to me in these cases, if something in the conversation seems problematic. I then complete these referrals.

We offer some strategies for phone calls, including reviewing the use of open-ended and yes/no questions and a handout on the principles of reflective listening. We have a tool for assessing one's own performance as an interviewer. It is a set of self-evaluation questions for the volunteer to consider after making a call. We think these materials are important because even though most of these volunteers are nurses, sometimes their training has not included a thorough introduction to grief.

Do you have anything in place to elicit feedback from the volunteers such as supervision or focus groups?

Last summer we had a meeting where the volunteers got together and talked about how things were going for them. I invited pastoral care chaplains from throughout the institution to that meeting. Volunteers talk about phone calls, and problems that they run into. They have commented on how to handle certain responses from family members or may ask how to handle a certain complaint. I can deal with most of the questions, but I think it is important for volunteers to know that the chaplains are involved in this work, too. In addition, I have a monthly letter that I send out with their assignment for the month. The main purpose of this memo or letter is to keep them updated on any educational opportunities that they may share with the bereaved family members they are calling. I also use this letter to praise them for their work and keep up morale.

How do the Pastoral Care associates help?

Their presence at the meeting reinforces their role as the resource for the volunteers on the unit. Say, for instance, a volunteer has made a phone call to a family member, and the volunteer has a question or concern that he or she hasn't reached me about yet. That volunteer can go to chaplain and say, 'You know I called this person the other night—can you help me with this?'

Perhaps it is not surprising, given these efforts to listen and follow through with families' concerns or complaints, but our Risk Management Department did notice differences between the units where the pilot program was in place and other units in the hospital. During the pilot stage of the Bereavement Care Track, Risk Management reported no complaints from the pilot units regarding care received at the end of life. The number of complaints from the other units averaged 4-5 per year. Although, this was not a goal of the program, the pilot program suggests that this in-person contact with families shortly after a death can address anger and disappointment with care in a constructive way. We don't yet know if its implementation system-wide will have an effect on complaints to Risk Management across the system.

What do you think the main impact of this intervention is, in terms of the bereaved families?

The main thing that I hear from people is that the education that they're receiving from the brochures is extremely helpful to them. Based on the analysis of the results of the quality improvement questionnaire we send out at nine months, we have learned that the brochures are helpful. I believe that the brochures help families feel that their own experience is valid—that they're okay where they're at, in the grief process. I think people need that reassurance. I would say that's the biggest thing that this program provides, even more so than the phone calls, per se, is that it provides people with a resource.

I've found, through my long experience in the perinatal loss program, that if people know that a resource is available, even when a large percent of the people don't use it, they feel comforted just knowing that somebody is there. I would say that's the biggest thing that we offer.

Have you analyzed the open-ended responses in the satisfaction survey? What kinds of things are bereaved family members saying?

Most of the open-ended responses express thanks for our efforts and the care their relative received. I have had letters attached describing an incident that still is upsetting to the family. I copy and forward them to the relevant unit director. Some families describe complaints about a physician. If it's an incident in the ICU with a St. Vincent's physician, I will actually photocopy the letter and send it to the director of nursing, and to the medical director of ICU so that they can follow-up with it. The directors usually get back to me. If I don't hear from them within a timely fashion I ask them what they've done about it, so that I can get back to the family and offer some follow-up information. It's so important for families to know that I've read the letter and that the letter meant something.

Do you evaluate your volunteers at all?

I do not have a procedure for evaluating the volunteers for this program at this time. We just encourage them to use the self-evaluation questions in the manual. I have had a couple of volunteers discontinue making phone calls after evaluating their own comfort level and technique.

Prior to the development of the volunteer program, I was overwhelmed by the volume of calls. Probably the biggest thing that anybody who is building a program like this needs to be aware of is burnout. I do a lot of teaching about burnout to my volunteers. My volunteers have the option of making only one phone call a year. They are in total control of their time and how much they choose to volunteer. If they want to take the summer off, they let me know. I try to never, ever make them feel guilty about whatever they're doing. You can't require volunteers to do what they don't want or can't do.

Chaplain Carey Landry, from St. Vincent's Carmel Hospital presented how he runs the Bereavement Care Track at Carmel where they deal with 5-8 deaths per month to the pastoral care department here at St. Vincent's. The chaplains here, at this much larger setting said, "We can't possibly do all that." Some units have very few deaths, but some units are so overloaded. For example, the ICU alone has three to four times the number of deaths per month as all of Carmel Hospital. The two part-time chaplains connected with that unit are both wonderful people, but the volume is too great for them to supervise the logistics of distributing the initial phone calls and background information, not to mention making initial calls.

What is in place to keep this system viable for you—are there any other paid staff who are committed to making sure the calls get made?

Since 1997, I have to be honest and say I have been close to burnout one time. Luckily, I then went on vacation and subsequently felt refreshed. Unfortunately, there are no other paid associates who are committed to making sure the calls get made if I need to take time off. However, I do have many allies here at the hospital who are very supportive. As the volunteer program continues to grow I gain more confidence in the continued success of this program.

What might you like to do differently?

There are a few bereaved family members that probably would benefit from more frequent phone calls, or more extended phone calls. For instance, some family members would like to get calls at nine months, and twelve months. I've encouraged my volunteers to let them know that the six-month call is the final phone call, and at that point to ask family members if they need a further phone call. And if they do, I've got a certain calendar, in which I mark down the extra phone calls. When that date comes up, I will send it back to their volunteer, or I will call the family.

We would also like to develop our policies and procedures into standards of care for bereavement care across our system. We had an earlier goal of doing so, but have not been able to get there yet.

In thinking about how to improve the program, I think we can strengthen the evaluation and feedback components of the program. Specifically, we need to:

• Offer more ongoing supervision and support to the volunteers
• Offer family members the opportunity to participate in a focus group after the one-year anniversary of the death

The Bereavement Care Program is currently expanding into the anticipatory grief stage of the dying process for our patients and their family members. Strengthening the hospital staff's knowledge base in this area will also support and improve the care of families, before and after the death of a loved one. We need to continue system-wide efforts to:

• Continue education for all staff on compassionate care of the dying
• Educate staff on ethics and futile care and the transition from aggressive curative care to comfort care for the dying

Four times a year, we provide a one-day workshop for any associate from St. Vincent's Hospital and the affiliate hospitals called Compassionate Care of the Dying. The Compassionate Care of the Dying workshop consists of a multidisciplinary panel discussing holistic care at the end of life, a panel of patients and family members telling their stories, a plenary session on ethics, breakout sessions on pain management, ethics, spirituality of dying and multicultural aspects of dying, group discussions and care of the caregiver. The burnout issue was discussed at the beginning of the day and at the end.

We are also beginning to work with each "service line" in the hospital on anticipatory grief. Are we serving as patient advocates? Are we providing them with a safe and peaceful atmosphere in which to die? This is a main topic during the conversations held with the family members following their loss. Did they feel safe? Was their loved one able to die a "good" death?

If you were to advise others seeking to replicate the Bereavement Care Track, what key piece of advice would you offer?

Start off small. To expand to a full bereavement care program, it might work better to have at least two people sharing the bereavement care coordinator position, so that the program does not depend on just one person. I would say, "Take it slow. Be flexible and start with a pilot program first."

References:

1. Supportive Care of the Dying publishes a quarterly newsletter as well as researching projects, and developing and testing new tools for members before they are offered to the public. For more information see www.careofdying.org [Return to Promising Practice]

2. McSkimming A, Hodges M, Super A, et al. The experience of life-threatening illness: Patients' and their loved ones' perspectives. Journal of Palliative Medicine. 1999;2(2):173-184.[Return to Promising Practice]

3. Carroll K. Four point strategic plan for supportive care. Supportive Voice. Fall 1998-Winter 1999 at www.careofdying.org [Return to Promising Practice]

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