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Research Reports |
KM Mackey, PT, MS, was a full-time graduate student at the University of North Carolina, Chapel Hill, NC, when this study was conducted. Address all correspondence to Ms Mackey at 5131 Avalon Valley Dr, Danbury, CT 06810 (USA) (themackeys{at}hotmail.com)
JW Sparling, PT, OT, PhD, is Associate Professor, Emerita, Division of Physical Therapy, University of North Carolina, Chapel Hill, NC
Submitted May 21, 1998;
Accepted January 28, 2000
 | Abstract |
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Key Words: Death and dying • Geriatrics • Hospice care • Oncology • Palliative care • Terminal illness
| Introduction |
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 TopAbstract Introduction MethodResultsDiscussionConclusionReferences |
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The number of physical therapists providing palliative care to patients is unknown.6 Most physical therapists, however, at some time in their careers are expected to encounter patients who die.7 In professional (entry-level) education programs, little time is required to be spent on death and dying issues.8 There is a paucity of physical therapy literature to educate, guide, and support therapists involved in caring for patients who are dying.7,9 An understanding of the essence of the dying experience,10(p88),11 from a total-person (body, mind, spirit, and society) perspective,12 may enable physical therapists to provide more appropriate and meaningful care, thereby enhancing the overall quality of life of patients in their last months, weeks, and days. The purpose of this study was to gain knowledge that may assist physical therapists in more accurately assessing and interacting with older people with cancer receiving hospice care. The goal, therefore, is to provide more effective physical therapy. In addition, a method is presented for future research with this population.
Hospice programs exist to provide palliative care for patients dying of terminal illness. Palliative care is the active total care of patients whose disease is unresponsive to curative treatment.13 The 6 fundamental principles of palliative care are13:
Palliative care providers respect and attend to the individual needs of each patient from a perspective of "total pain," defined as physical pain + emotional pain + psychological pain + spiritual pain.14 Hospice care is patient-centered, acknowledging the individuality of patients3,15 and their personal quality-of-life "agendas."16,17
The hospice movement and its philosophy of patient care extend throughout the world. In December 1995, approximately 2,620 hospice programs were in existence in the United States, serving over 340,000 patients and their families.6 More recent data from the National Hospice Organization (NHO) show that, as of June 1997, these numbers had increased to 3,000 hospice programs serving over 450,000 patients and their families.18 Current trends, therefore, indicate that the need for hospice services will continue to grow. Currently, most patients seen in hospice programs are over the age of 65 years (75%) and have a diagnosis of cancer (78%).6
Age is one of many factors affecting quality of life. The "graying" of the American population is well documented. Between 1990 and 2040, the number of Americans over the age of 65 years will likely increase from 31,079,000 to 75,588,000, which is an increase from 12.5% to 20.7% of the total population.19 Older adults frequently have multiple chronic medical conditions,20–22 decreased social and financial support,22 and reduced physical capacity reserve23,24 and have experienced multiple losses. More than two thirds of all deaths in the United States are of people over the age of 65 years.25 Even though they experience less death anxiety than younger people do,21,22,26,27 a dying person's quality of life may be impaired by the way in which society views death. The socially inappropriate, unknown, and unspeakable nature of death26,28 may cause apprehension, distress, and isolation.21,29,30
Cancer is the second leading cause of death in the older adult population, and its incidence increased from 16.8% in 1967 to 22.3% in 1986.19 The World Health Organization estimates that 15 million people will develop cancer in 2015, up from approximately 9 million people in 1985.28 Based on this information, the number of older adult patients with cancer who require hospice services, including physical therapy, will continue to grow.
Researchers suggest that many health care professionals are uninterested in and feel negatively about providing care for aged people.31 Studies of nurses working with patients who are dying have noted that, although nurses spend more time with patients who are dying than with patients who are not dying, they actually demonstrate more verbal and nonverbal avoidance behavior with the patients who are dying.32 Although death in old age is accepted by most people as being on time with life's course, this belief may create medical professionals who regard older adults as prematurely dead and, therefore, fail to fully meet their needs.33 Effects of terminal cancer such as drastic weight loss, steroid-induced "moon face," loss of hair, and breast removal may add to the negative image of patients who are dying. Little research exists that attempts to explain the living-while-dying experience of older adults who are terminally ill.22,27
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Informants
Four older patients receiving hospice care were asked to participate in this study (Table). They met the criteria for hospice care by being aware of their terminal prognoses and requesting to cease active curative treatment attempts. Three women agreed to participate, and 1 man refused to participate. One informant was physically limited by fatigue but required no assistive devices, the second informant was wheelchair bound, and the third informant was bedridden. The length of time from diagnosis to the time of interviews ranged from 3 months to 2 years, and the length of time as a patient receiving hospice care ranged from 3 months to 1 year. Two informants remained in their own homes with a spouse or family present, and one informant stayed with a daughter. An additional patient receiving hospice care, of the same sex and age group as the primary informants but with a diagnosis of congestive heart failure, was also selected for participation in the study. Data from this accessory informant and a pilot study informant were used to assess similarities and discrepancies in the experiences of informants with a different diagnosis or phase of disease progression, thus providing a broader perspective on the experience of dying. The pilot and accessory informants were selected as "confirming or disconfirming cases."10 Their stories were used to check on the patterns emerging from the more homogeneous sample of older people with terminal cancer.
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Additional instrumentation included audiotapes and a tape recorder for informant interviews. The principal investigator kept extensive field notes, in which contextual details of data-gathering sessions were documented. Information gained outside of interview sessions from family members and hospice nurses caring for the informants was recorded in this field diary. Use of these additional sources of data, referred to in qualitative research as "triangulation,"35 serves to confirm, clarify, or supplement informant data. Triangulation adds to the credibility of later data interpretation.
Procedure
Informants were obtained through a hospice program serving a large rural county of approximately 40,000 people in North Carolina. Hospice nurses in one rural county identified potential study participants over the age of 60 years with a primary diagnosis of cancer. After discussing the study with these people, the nurses referred the principal investigator to the other 3 patients, who expressed interest in participation. The principal investigator met with the potential informants to explain the study, and all 3 informants agreed to participate and gave their informed consent.
The principal investigator conducted in-depth, unstructured interviews with the informants to obtain and explore their unique interpretations of living while dying. Interviews took place in the informants' homes at mutually agreed-on times. Except for one interview where an informant's daughter was present, the principle investigator was alone with each informant. A tape recorder preserved data in the exact words of the participants. Each informant was interviewed twice, with 1 to 2 weeks between interviews to allow for informant reflection and preliminary analysis of data. Approximately 20 to 30 minutes was spent prior to the interview in general conversation and rapport building, with the interviews then ranging from 20 to 80 minutes, depending on informant tolerance and interest.
Interviews were conducted as unstructured "purposeful conversations."38,39 The principal investigator used broad, open-ended questions, such as, "Please tell me about your illness." Thus, the informants were free to discuss the topics related to their experiences that were of special importance to them. Periodically throughout the interview sessions, the investigator verified with informants the content of data obtained as a means of "member checking,"36 a technique used to confirm with the informant that the investigator's data were correct. These ongoing checks during the interviews promoted the credibility of later data interpretation. The investigator completed writing field notes within 24 hours of each interview to ensure that details were not forgotten.36 An outside source with experience in transcription techniques transcribed audiotapes of the interviews. Prior to analysis, the principal investigator reviewed the transcripts for errors and added nonverbal information, such as informant hesitations, laughter, and sighs, to the transcript.
Grounded theory procedures and techniques, as specified by Strauss and Corbin,40 were used to systematically analyze collected data. Analysis by grounded theory techniques included 3 types of coding of data: open, axial, and selective. Simplistic examples are given to define this detailed and time-consuming process. Open coding involved breaking the transcript apart into individual words or sentences, which were labeled for the concept they appeared to represent. For example, "Religion means a whole lot to me" was labeled "religion." The statement "When it's [life's] over, it's over" referred to life after death and was labeled "religious belief." Next, concepts were regrouped to form more abstract categories that appeared significant to the overall phenomenon being studied. Religion and religious belief were grouped under "faith." In axial coding, data concepts and categories were related, forming a paradigm model reflecting an informant's personal experience. "Helping others" and "faith" were combined under "personal values." In selective coding, a core category was identified to represent the essence of the individual experience. In this example, "spirituality" became the unifying code for religion and personal values. Each core category provided the structure for the development of a descriptive narrative about the phenomenon, otherwise known as a "story," for each informant. The constant comparative method of analysis was used throughout data collection and analysis. The data were compared, questioned, broken down, grouped, and regrouped continually throughout analysis to attain depth and accuracy of interpretation.
| Results |
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Story of "Fran" (Informant 1)
Having grown up on a Minnesota farm, Fran regarded her childhood warmly and was thankful for her parents and for the experiences and memories they provided her.
And when I would come home from school, running out to the fields where he had been picking corn and Daddy putting me high up on top of the feed wagon of corn. You know, what a thrill as a child, sitting up there looking at the whole world. I was riding on a glass pumpkin.
This woman's adult years were lived with a focus on other people, as a wife, mother, and first-grade teacher.
My greatest joys are that I have lived another day, that I still have Ed [her husband], the children, my sister, my mother, and lots of good friends and neighbors.
Being a good person and helping other people were consistent goals throughout Fran's life, guiding her behavior and actions. Her reason for participating in this study was a hope that her contribution may one day serve to help others.
And as far as doing kind deeds or things for people, I did a lot of that before. It is very important to me.
Diagnosed with colon cancer in the spring of her retirement year from teaching, Fran and her husband decided to proceed with their plans to build a home and retire in North Carolina.
Well, this really threw us for a tizzy, because I had never ever been ill in my life ... but it was something that happened, and we just had to go on. ... So, I finished radiation on the 25th of June [in Maryland], and we were here on the 26th, in North Carolina.
At the time of the interviews, this woman been receiving hospice care for over a year. Her disease was slowly progressing, with gradually increasing fatigue and discomfort. Aside from intermittent "bad days," she stated she felt "fairly healthy and fairly strong." Fran recognized her physical limitations; she turned over care of her much-loved garden to her husband and spoke of other activities in which she no longer was able to take part.
I love to cook. I don't cook very much any more. I like to ride my bike; I should try it. ... It bothers me that I can't do it. Ed and I used to do all kinds of dancing, square dancing. We don't do any of that now. And I do miss it.
Psychologically, Fran's response to her terminal disease and impending death was governed by a delicate balance between her thoughts and emotions.
Of course you don't want to accept it; but, if you don't accept it and go on with your life, you are going to be crying every day, all day long—and life is too short to do that, I think. It is not a nice thing to accept, but like I said, that is the bag I carry.
Although apparently accepting intellectually the living-dying nature of her life, emotionally this woman grieved over the loss of a future with her family and struggled with the uncertainty of when and how the active dying process would occur.
(Crying) And they [her children] are grown, and I know they're on their way, that they can get along without me. The saddest part, I think, is that I won't ever see them again, and that makes me sad.I can't say I'm afraid. I just think about when will it be. Will I get sick? (Crying) Sometimes when I go to sleep, I think maybe someday I'll just go to sleep. And that would be nice for everybody. But I'm not afraid; as far as that goes, everybody is going to die sometime.
With such differing intellectual and emotional responses, Fran relied primarily on social support for strength. Spirituality, including organized religion, was not of particular importance to her. Her Unitarian-based beliefs, however, influenced her living-dying experience and her expectations of total finality in death.
I think when it's over, it's over. ... Your life was here, your happiness and your sadness are right here.
Fran developed specific strategies to maintain a positive focus in the days remaining, appreciating the past as well as each moment of the present.
It was hard to think about anything else but my health, until I said, "This has got to stop. You can't do anything about it; so let's get on with happiness." And we have tried, have really tried. ... And also, I know when I have so few days left, I would rather have my family remember me as a ... (crying and laughing) cheerful person that isn't sitting around crying all the time. ... I am a happy woman.
Other strategies included open communication regarding the disease and goal setting.
I think we talk about it every day. ... I don't think [my daughter] likes to talk about it, but she can.You have goals, or I do. I am a very methodical person. [I] have things planned, and maybe that is why this is hard, too, because I didn't plan this. ... The first goal I had after I was sick—I was really ill—was that I would live till the grandchild was born in December and that was from June till December. ... And then my goal after that is, I don't know ... I guess live to Christmas again so that I can see my kids.
Fran persevered with living in the face of terminal cancer and the disparate intellectual and emotional responses it provoked.
Story of "Helen" (Informant 2)
Enduring end-stage terminal cancer, Helen's story focuses on faith and family. A woman of few words, Helen described the importance of religion and churchgoing as a social outlet. Her 2 brothers were ministers.
[Religion] means a whole lot to me, to tell the truth. Big part of my life.
Helen derived great joy and satisfaction from her close family circle. Her adult years were spent as a homemaker and raising 6 children. Most of her time had been spent closely involved with her children and 13 grandchildren. Prior to Helen's recent diagnosis, she was baby-sitting for her 3-year-old granddaughter on a daily basis in her own home. Helen's husband and one of her sons died of cancer over 11 years prior to the interviews. When asked what makes up a good day, Helen responded sitting around her daughter's home and playing with her granddaughter.
As long as the children are happy, I'm happy.
Approximately 3 months before her interviews, Helen was diagnosed with lung cancer with brain and bone metastases. The disease progressed rapidly, and at the time of the interviews, Helen was using oxygen for shortness of breath and a wheelchair for most locomotion. Past radiation treatments to her brain left her without hair, and steroids gave her a moon-faced appearance. Although the hospice nurse reported that this woman had frequent "bad" headaches, Helen did not complain of this or of anything else. When asked about her pain, she replied:
Not too much. Usually, not too much. Everything's taken care of.
Because of the extent of caregiving required, she was no longer able to live in her home of over 30 years and was staying with a daughter. She acknowledged missing her home, her belongings, the son who had been living with her, and parts of her daily routine. When asked what she missed about her home and activity, she said:
Miss my fires [from a wood-burning furnace] ... getting to see [baby-sit] my grandbaby.
Psychologically, this woman acknowledged feelings of sadness related to her illness and its prognosis.
You can't help but feel sad.
Although Helen stated that she was scared during her hospitalization, at the time of the interview she denied fear or worry, other than concern about her frequent shortness of breath. When asked if she felt angry sometimes, she responded,
No use to be angry.
Helen was aware of her prognosis and made no attempt to deny or defy the rapid progression of her disease. She was realistic in her expectations of what the future would hold.
I know there's going to be good days, and bad days, and all this, you know?
With passive acceptance, she succumbed to the effects of her cancer; yet, this woman actively determined how she would "get through" her experience and upon what she would or would not focus during her final months, weeks, and days. Helen appeared to use 3 primary strategies to endure her terminal cancer. The first was a conscious attempt at controlling the extent of her thoughts and emotions: she acknowledged that she tried not to think about her illness and the limited amount of life she had left to live; while recently hospitalized, she focused on the daily routine and the things that were predictable in her day.
Just kept going through a little treatment ... putyouonthe table ... get up the next morning and do the same thing over again.
The second way she endured a dying life was by maintaining a focus on her family, rather than on herself and what was happening to her. She surrounded herself with her children and grandchildren and, by doing so, was able to get through days with some pleasure.
If [you] get somebody to talk to you, I'm all right.
Lastly, maintenance of this woman's spiritual beliefs and religious practices contributed to her ability to endure. A "very religious sister" visited and telephoned regularly to read the Bible to her, and Helen acknowledged praying to God and feeling comforted by the belief that He was taking care of her. Also related to Helen's spirituality were her beliefs in a life after death, when she would be reunited with her husband.
This woman appeared to use selective thinking and maintenance of family relationships and religious faith to endure the experience of end-stage terminal illness, preserving as much as possible the aspects of life most meaningful to her. Helen died 5 days after her second interview.
Story of "Isabel" (Informant 3)
This woman's story remained closely guarded and was not easily revealed to family, caregivers, or the investigator. Only in rare moments did Isabel allow her children and a familiar hospice aide, who spent regular and extended periods of time with her, to glimpse what she thought and felt. Isabel's daughter stated that, over the past 3 years while her mother had been sick with congestive heart failure and, more recently, with lymphoma, she had become less talkative. The hospice aide confirmed that only occasionally, at times of Isabel's choosing, would she speak of her illness or show emotion, such as crying: "She [Isabel] is tired, but doesn't want to leave her family."
According to the informant's daughter and hospice nurse, Isabel was a religious woman with a high school education who worked as a "dietitian" in a local convalescent home while raising 8 children. Both her parents and her deceased husband were farmers in the rural North Carolina county in which the study was conducted. This woman had lived in the area all her life and continued to live in the home she and her husband built 40 years before. Isabel was bedridden in the very room in which her husband had died of cancer in the 1980s. Her children and grandchildren were sharing in her caregiving responsibilities.
Although consenting to participate in this study, Isabel offered little more than intermittent "yes" or "no" responses, factual information, and occasional head nodding. The second interview session was not taped to prevent the recorder from inhibiting the informant's responses. During this interview, Isabel was reportedly "feeling better" than at the first interview; and the principal investigator noted the informant was slightly more communicative. The topics that did elicit a response were family, religion, past activities or roles, reminiscing, and present limitations. For example:
(What helps you through these tough times?)
Kids.
(Tell me about your past life.)
Taking care of the family.
(Is it frustrating to you to not be active?)
Nodded "yes."
(Which activities do you miss?)
Domestic work.
(Did you attend the church just down the road?)
Nodded "yes," with more emphasis than most responses.
(Does someone read the Bible to you?)
I read it myself.
Only once did she respond to a question about her thoughts.
I try to think positive.
Isabel died 2
weeks following her second interview.
| Discussion |
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TopAbstractIntroductionMethodResultsDiscussionConclusionReferences |
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An intact spiritual faith appeared to help the informants in our study to respond to terminal illness with strength and acceptance, enhancing their quality of life until death.41,43 For Helen and Isabel, like many older people,44 spirituality had been of lifelong importance, expressed through active religious involvement. For Fran, spirituality was expressed in helping others. Therapists who practice with an appreciation for patients' beliefs, values, and sources of meaning in life may be better able to encourage spiritual strength in their patients. Therapists could provide opportunities to discuss the patients' values and beliefs and help patients reminisce about topics of spirituality. Conversations about spirituality will validate these aspects of the person and allow patients to give as well as receive.
The acceptance of personal mortality may be partially explained by the role death or loss previously played in the lives of informants.22,27 In addition to losses of husband and children, Fran, Helen, and Isabel expressed sadness over losses of hobbies, control, unfulfilled potential, connection with loved ones, and physical independence. Each informant used distinct action or interactional strategies40 to continue living through her dying experience. Informants consciously adhered to the strategies that gave structure to their life. Physical therapists who are able to listen to patients and discover the particular strategies the patients are using may more effectively support these strategies and integrate them into the format, focus, and goal setting used in physical therapy interactions and interventions. Therapists who possess knowledge of their patients' self-defining roles, routine pursuits, and valued relationships may be better equipped to tailor treatment to the individual.
In addition, we believe physical therapists may do much to enhance their dying patients' quality of life by exploring with them the meanings found in their lives. At a time when older adults with terminal illness are facing the developmental stage of integrating all aspects of their lives,45 physical therapists may assist them to reflect on the purposes, priorities, and meanings their life has had. This reflection may be encouraged by casually reminiscing with patients46 and discussing with them sources of personal meaning, such as things believed in, things loved, things of meaning being left behind, and things done or achieved.12 By providing patients with opportunities to voice concerns, grief, and reflections related to what they are going through and by attentively listening to all that is said and intimated, clinicians may gain an understanding of their patients' death-related anxieties. An intact knowledge of the physiological processes of death and variability in psychological reactions will enable physical therapists to share with patients and families answers to general questions related to physiological signs and symptoms of active dying and the typical sequence of events. Openly communicating about the dying process, the normality of fluctuating emotional levels, and anticipatory grief may reduce patient's fear of the unknown and reinforce coping abilities.
Finally, the women grieved over the loss of familiar physical activities, such as cooking, gardening, babysitting, and square dancing, all of which had held special meaning in their earlier lives. Self-identity and sense of control appear to be closely tied to the performance of routine, familiar activities.20 We believe the data indicate that an inability to carry out daily activities, roles, and relationships caused a disruption in their sense of self and required them to redefine relationships among self, body, environment, and everyday life. To further maximize meaning for patients who are dying, while maximizing endurance and conserving energy, physical therapists may foster continuity of those physical activities that have held particular meaning in the patients' lives. For example, at the time of the interviews, Fran, who was an avid gardener and landscaper, was still able to participate in these activities to a limited extent on a "good" day. As her disease progressed and she experienced increasing functional impairment, a physical therapist might have continued to work with her on potted plants indoors, rather than attempting straightforward gentle, repetitive upper-extremity strengthening or range of motion exercise. Or the therapist might have educated the family, in addition to transfer training and positioning for comfort techniques, to move her bed out-of-doors or by a window from time to time to maintain continuity of her love for nature.
The research methods and procedures used in this study were consistent with the expressed needs and condition of the hospice informants. Considering the hospice informants' vulnerable condition, it would be inappropriate to try to manipulate or control the informants or their individual contexts. We believe control and manipulation of contexts in order to generalize data are the hallmarks of quantitative research. Unlike quantitative methodology, qualitative inquiry does not attempt to generalize across populations and settings, but seeks to elucidate similarities among informants and their contexts that may "transfer" to other informants and their contexts. Every informant's context is different. The degree of transferability is dependent on the similarity of the contexts, not on control of contexts. We contend that even if the quantitative approach were used, it would result only in a "working hypothesis"47 that would be found tentative in replication in another context.
In future qualitative studies with a greater number of hospice informants, a researcher may go beyond selective coding and story development to propose an encompassing theory about the phenomenon under study. Because this theory would be derived from analysis of all data, it would be "grounded" in the data and, therefore, would be a grounded theory.40 Once an appropriately developed theory exists, it could possibly be tested using quantitative methodology.
Limitations
The small number of informants and their lack of physical therapy in hospice care prevented us from making definitive statements about physical therapy with this sample. The purpose of the interviews, however, was to assess and elucidate the needs of informants receiving hospice care and not to gain an evaluation of physical therapy. Further qualitative studies are indicated involving more subjects, men, and older geriatric patients from different areas of the country. As differences in experiences over the hospice period may be partially accounted for by informants who are at different phases in their disease progression, studies using multiple interviews in a longitudinal design may educate therapists about time- or phase-related aspects of the living-while-dying experience.
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TopAbstractIntroductionMethodResultsDiscussionConclusionReferences |
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| Footnotes |
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This study was completed in partial fulfillment of the requirements for Ms Mackey's master of science degree in human movement science at the University of North Carolina at Chapel Hill.
This study was approved by the Committee on the Protection of the Rights of Human Subjects at the University of North Carolina at Chapel Hill.
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This article has been cited by other articles:
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  Z. Chouliara, N. Kearney, D. Stott, A. Molassiotis, and M. Miller Perceptions of older people with cancer of information, decision making and treatment: a systematic review of selected literature Ann. Onc., November 1, 2004; 15(11): 1596 - 1602. [Abstract] [Full Text] [PDF]
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| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
