~yc~~s~c~a~ Aspects of Palliative Care in Advanced Cancer Robin D. Miller, MSSA, and T. Declan Walsh, MSc Thz Ckvefun$ Clinic Fotmhkm, Cleveland,Ohio
One hudwd fatknt~ with advmctd cancer re$wed to a #dative care smite were Defoe PfycAarociald&tressu&g a standard questionnaire, A high incidence q
distress,ati home=carepoblems wQE found. Psychosocial is burns among etch (and th~i~~arn~~its~ with advarscedcaucet and may have a s~~~a~t Ernst ou ~o~~io~ i$o~~~~ cart. Communj~services are 0Jten ve care se&z @rn~~~j~a rnu~t~~c~~~uu~ avouch t speciJiG~~comrn~t~~ about how to combat ~~~~ distressusing spec$c adminrjt&vt and management techniques, J Pain Symptom Manage 1991;6:24-29. +wt, JinatDcrit
In November 9%3@,the Cleveland Clinic Foundation initiated a palliative care service (KS) pilot project to provide symptom control for infants with advanced cancer. The core members of the PCS included a nurse clinician, a part-time social worker, and a part-time medical director. The positive response by referring physicians, patients, their families, and health care professionals, ted to the appointment of a f&time medical director, nurse, and social wwker. la October 1987, the PCS began full operation. The service bases its approach on the palliative care philosophy that neither hastubs death nor proliongs life, but emphasizes
comfort in terminal illness.’ The focus is upon life-affirming activities, enabling each person to live as fully as possible until death. The service is a comprehensive program to support patients and their families though a difficult time.* The PCS is an innovative approach to mana~ment of advanced cancer in a tertiary care facility. Although not restricted to cancer patients nor to the terminally ill, most persons referred suffer from advanced cancer. In this paper, we report data derived from a prospective psychosocial evaluation of advanced cancer patients referred to the PCS.
Role and Function of PalliativeCare Service The PCS now provides both inpatient and outpatient care for cancer patients with symptom m~a~ment problems. All referrals originate from physicians. Once a referral is made,
Q US Cancer Pain Relief Committee, 1991 lpllbtisbedby Etsevier, NewYork, New York
Vol. 6 No. I Junuasy 1991
Palliative Care in Advanced Cs *cer
the patient is reviewed within 24 hr by a physician, nurse, and social worker, all of whom specialize in symptomatic care of advanced cancer. A nurse clinician conducts the initial assessment, including a comprehensive review of the past medical history and present symptom problems. This is summarize in a formal typewritten note in the chart using a standard format. The physician then focuses on control of symptoms. Common problems include pain, nausea, vomiting, lack of appetite, dehydration, electrolyte imbalance, and constipation. Expert advice is therefore immediately available to alleviate problems that are creating major physical difficulties for patients and their families.
A social worker evaluated the patient and family at the same time the physician and
nurse
were focusing on the medical problems. A standard psychosocial assessment form developed
25
for this purpose is completed for every patient within 2 days of the referral. The form is a one page checklist (Table 1) completed by the social worker in a lO- to 15-min interview, This reviews immediate problems the illness is creating for the entire family and provides information about demographic items, financial status, insurance coverage, emotional disposition, family relationships, home-going needs and availability of caregivers. This report describes the results of this evaluation in the first 100 patients treated with our program. No control data were collected reg~~rdil~gthe emotional distress of individuals without cancer; further research is required to document the emotional distress of advanced cancer patients compared to a nonc;mcer population.
b??sults From October 1987 to May 1988, one hundred consecutive psychosocial assessments were
Table f Palliative Care Social Work Assessment Address Phone #
(Nameplate) Age _
B.D.
SpOUSe
Occupation Married ___Sep-D._Financial Resources Disability _ Wages _ Pension _ Welfare _.,_ Financial di~cuIties: Yes -
W--
Single Insurarw~ Coofrage
SSI Other NoI
P&e&s Em&us (Check if signifcant) Depression -_._ Fear ._ Anxiety _ Irritable Guilt -_ Anger Hallucinations _ Lonely PL4mto Provide Crisis Intervention -
Emotional support -
Counseling -
Grief _ Family counseling Marital counseling Counseling ___ Other Pan Holy Family ECF _ Other _.._
Hospital -_.._
Re&rals for Psychiatry Spiritual counseling -
Graph representative of family dynamics
Blue Cross ____ Medicare ____ Aetna ____ None .,._._ Medicaid _ Other Insurance # Medica~/medicaid # Continuib of Caw (check any problem areas) Family capability Caregiver identified Caregiver assistance Caregiver fatigue __.Equipment _ IV.1‘PN,TF Skilled nursing _ Support Transportation _ Housing _ Food preparation _ Co~~u~j~ Referrats
Hospice 24-hr care _ Nursing agency Equipment ACS Ambulance Volunteers -Clinicare Counseling __-.. Meals on Wheels Protective services ..-.-
Miller and Walsh
26
compkted, so all figures quoted are absolute numbers as well as percentages. Of the padents referred 62% were men and 38% were women; 72% were married, 10% divorced, 14% wid-
owed, and 4% had never married. The Cleveland Ctiiic is located in Cuyahoga County, tiia, and 61% were county residents. Another 35% resided in the state of Ohio and 4% were from other states. The age range was 37-89, with a median of 64 yr. Most were between 60
Journal of Pain and SymptomManagement
Table3 Medicai Insurance Coverage Medicareplus additional insurance Privateinsurance Blue Cross Aetna Medicaid Blue Cross plus a~itional insurance No insurance
Medicare responding, five were confused and three were comatose.
Prior to referral,most patients, were not employed (Table 2), The total of retired,Diablo* homemaker, and unemployed equals 83 primary source of finance for 70% of came from a fixed income, Thirty event of the familii relied on a wage earner: in just over half of rhese, this was the patient, whose job would be at risk with the continued progression of disease. pinion percent of ~tients requested financial assistance. Ninety percent had hospitalization insurance (Table 3). Assessment of home-care problems (Table 4) revealed that only 31 patients had more than one caregiverto assistthem, Table 5 details the disposition of those able to leave the hospital. ~~a~~ of the p~blems of jdentifying a caregiver, caregiver fatigue and lack of community resources, 20 patients were not able to go home and were either transferred to another institution or dii at the C~veland Clinic. Of the 92 patients who completed the emotional assessment ineludti in the assessment fbrm (Table l), 34 were affected by three ar ~~~~s* 31 listcpl two, 22 listed one (Table 6); five stated that they were not concerned about any of the emotions listed. Five stated that they had hallu~nati~s during their hospital stay. 0f the eight who were incapable of
TaQIc2 Fiarnrii Status sf Patientswith AdvancedCancer
Patient’s e~~~~nt status
UaeInpIoyed
1%
~rna~ familyincome
savings
I%
Patients with advanced cancer have many p~blems in addition to their physical illness. It is important to address the psychosocial needs of the patient and family as well as their physical care. Families were usually understaffed to care for a seriously ill patient at home. The inability to identify a caregiver or an assistant to the caregiver is a S&WS problem (Table 4). To provide home care for a loved one, the caregiver must deal with his or her own grief as well as handle the anxiety, depression, and/or fear the patient experiences, assist the patient’sactivities of daily living, and su~rvise medicatjon in addition to family administrativeissues, including insurance paper work.’ Thirty-seven patients were evaluated as unable to return home wjth~ut 24-hr assistance, of whom 20 were transferred to other institutions or died in the hospital. Six patients went home Tat& I
Familyand Home Care Problems Only one caregiver identified Caregiverneeds lotions assistance Familyincapable of providing care Need for skilled nursing Caregiverfatigue Need for medical~uipment
PmElemsidentifyinga caregiver” No caregiveridentifieda Tube feeding Transportationdifficulties Intravenous fluids and drugs Foodpreparation problems Homeless
54% 47%
37% 30% 24%
21% 20% 15% 15%
:; 4% 1%
“I.5of the 20 patients who had faculty ~entifying a caregivercould not find anyone to provide care for them.
Vat. 6 No. 2 Januaty 1991
PalEialiveCuw in AdvancedCmmr
Table5 Hospital Diiharge
ford additional help to supplement Di~ition
nursing.
29% 27% 18% 10% 6% 4% 4% 2%
Of the remain-
ing 11 who went home despite co~~cernsabout the families’ ability to provide care, eight returned quickly to the hospital and two went from home to nursing homes; only one managed successfully at home, An adverse professional social work ~sessment, therefo~, appears to be a reliable predictor of home-care failure. The present focus by insurance companies to limit the length of time a patient is in the hospital creates a situation where- families must choose between nursing home and home care. A patient no longer can stay in the hospital to die. Faced with these two options, most patients and families choose home care, unless this is unmanageable. Typically, patients and their families expected their medical insurance to provide home care. Although 37 patients needed 24-hr assistance at home, only six were able to access this care through their insurance. All insurance companies had “skilled care” requirements for home nursing. Skilled care is generally defined as care that requires the technical expertise of a nurse. Each insurance company then specifies separately which technical assistance is included in their definition. In addition, many insurance companies (Medicareincluded) do not provide 24.hr home nursing care (most Aetna policies and some Blue Cross policies do provide this coverage). Because 70% lived on fixed incomes, most were unable to afTable6 Incidence of Emotional Distress Anxious S&depressed Fearful Irritable Lonely AW-Y U-able to assess
their insur-
ance. Because it is not “skilled care,” insurance
Intermittent home nursing care Home without nursing assistance Outpatient hospice care Died at Cleveland Clinic 24-hr home nursing care Transferred to another hospital Nursing home placement Inpatient hospice placement
with around-the-cl~k
27
63% 54% 39% 30% 13% 12% 8%
coverage for home health aides is limited. This often prevented patients obtaining care at home despite their wish, or their families wish to do SO. Medicare does have a provision for 24-hr home care for short-term respite under the hospice benefit, but this is subject to medical review. The rate of payment refusal is high, so many hospices are reluctant to provide it. The low number of referrals to hospice care in this survey was due to a unique sit~t~on in Cuyahoga ~~ounty, where only one small medicarecertified hospice existed at the time of these assessments. Changes in the patient’s physical condition affect the family ~ni~tlci~~lly.Only 17% of patients were elnployed at the time of referral and 27%! were disabled by their disease. This does not indicate the total extent of disease-related changes in employment status, as an unknown number of patients retired early due to their illness. Also, family members were not able to remain employed because of their responsibilities as primary caregiver. The result is that 70% of the families lived on a fixed income at a time of increasing medical expenses. Patients experience emotional distress in addition to their physical symptoms, Anxiety, sadness, fear, and/or irritability are normal for pa-
tients with advanced cancer.4-7 Anxiety can be caused by many factors, including the fear of unrelieved pain, the dying process, and death.’ Only five of the 100 patients stated they were not concerned about any of the emotions suggested. ‘i’he frequency, severity, and multiplicity of emotional distress greatly complicate medical care. Treatment of physical and emotional problems are inseparable; for example, easing pain reduces anxiety, and providing counseling for anxiety may decrease a patient’s
focus on their pain. Our data indicate that the patient with advanced cancer has major psychosocial needs in addition to physical problems. Most simultaneously experience multiple physical symptoms, emotional distress, home management condifficulties, and family cerns, financial fatigue.“~‘” This may be overwhelming. Traditional cancer services do not address these corn-
plex needs. It Specialized care that provides expertise in comprehensive physical and psychosocial management is required. A mul-
28
Miller and Wakh
ddisiplinary palliative care service best addresses these issues.
Given the problemswe have describedabove, and the inadequate community resources available, professbnals must be creative in their appoach. Based on our experience, we have found the allowing adds to h helpful
of physicalsymptoms is a mandatory
medical concerns than the cant tams. “Pain is the most dreaded symptom of advanced cancerJti It changes personality, rns, causes emot~nal lability in paproduces feelings of helplessness and frustration in Family members.‘* Traditional medical and nursing services are not knowledgeable about effective interventions.‘” Surp~ingly, medical oncohqists and radiition the~p~~ receive little or no Formal twining in this area. When an expert in symptom control directs special attention to the patient’spain or other problems, patient and family alike Feel that someone cares about their situation and When pain control is achieved, y the case* this creates positive patient and Familythat add sigly to their quality of life and ability to cope with a terminal illness.
We employ an educational and supportive group meeting attended by all Familymembers, as well as the physician, nurse, social worker, and other interested professionals. Patients may attend unless there are physical, family re~~~ip* or ~ych~o~~l concerns indicating that this would not be in their best interest, or would prevent frankdiscussion (Table 7). Good communication about these issues allows the i%tttilyto cope better with the future.” Family ~fe~~ also increase the numb OFavailable cam&era, because extended family members become aware of the overall situation and will offer to assist. Schedules can be developed that include several family members to distr&
Jawnal of Pain and Symjtam Management
Table 7 CommonFamily Conference Discus&m Points DiagtWk Extent of disease Nature of illness Explanation of symptoms Acuity of disease h@OSiS
Not Resuscitate”or “No Code” status Coals of treatment handling of eme~nci~ Home care issues Availabilitysf palliativecare service Community resources Options for terminal care Financialconcerns Un~ttl~ kgai matters gm~tional needs Methods for discussing situation with children Concerns about coping with a death at home Funeralarrangements “Da
ute the work load. Unfo~unately, in our expe-
rience, it is common For this to be the first opportunity Families have had to discuss future events with professional guidance.
The patient aud Fancilycan Cal1a specilk telephone number any time and speak with a nurse who has knowledge about their disease and care plan so detailed specialist advice is always available. patients and families anxious about returning home take comfort in the availability of this service. Access to the clinical nurse specialist who works directly with the physician and who understands their unique situation, eases concerns about crises that may happen at home. Changes in medication can be accompushy easily and quic~y, preventing inappropriate hospital admissions,
Once the Family is made aware of the patient’s unction and prognosis at the Family conference, counseling about the illness may be needed. Patients’ anxieties about dying must be gently addressed;4*7v14often they are most worried about Family members. They can be reassured that the family will manage despite Feeling a great sense OFloss, FamiIies Feel they are Falling apart, reacting abnormally.‘* A reminder of the normal process of grief, stress, and sadness that accompanies fatal illness helps restore confidence in the family. Communica-
29
tion between family members may need to be restored. Closure of family wounds and healing of relationships can ease worries about the future of the family unit.
1. Lamerton R. Care of the dying: St Joseph HOSpice. Hackney 1973:35-42.
Tmining in HonaeCare
2. Levy M. Palliative medicine: Palliat Care 1988;4: 15
Education about the correct use of medication, management of daily living activities, and any special care requirements reduces family anxiety about home care. The evaluations and help of the nurse, dietitian, and physical and occupational therapists are especially useful in this tgqaining.
a new approach.
3. Howell D. The impact of terminal spouse. J Palliat Care 198632:22-30.
illness
J
on the
4. Walsh TD, West TS. Controlling symptoms in advanced cancer. Br Med J 1988;296:477-481. 5. Bates ‘I’D. A clinician’s view on palliative care, terminal care and ~lIIi~lity of life. Eff Healtl~ Care IQ8fxi . :; 2*‘)1 I_ l-217. G. Crtssileth BR. Psychosocial problems and support ol’ the advanced cancer patient. Rays 1985; 10: ISI134,
Comprehensive care is necessary because of the complex needs of the patient with advanced cancer. The medical situation is constantly changing. Each change brings with it a reminder of mortality. Treatment should include medical management of symptoms, honest communication, counseling, provision of financial and insurance info~ation, and assistance/training for the caregiver. A multidisciplinary palliative care team, which understands the patient and family needs, is the best approach.“*“*“*” More information is needed concerning the many problems faced by the patient with advanced cancer. A better understanding of home-care problems would allow health care resources to be allocated efficiently and appropriately. A study of the impact of insurancvtcoverage on families’ability to manage the cancer patient at home, and its effect on hospital readmissions, would be invaluable. Further study regarding the emotions experienced by patients and family members would improve care.
7. Rand 1‘. C;ricf, dying and death. IL: Research Press, 1934:227-2~~).
Ct~illnpi~i~Il,
8. Kalish, R. Coping with death, In: Ahmed P, ed, Living and dying with cancer. New York: Elscvier, 1981:22 l-239. 9. Gotay CC. Models of terminal care: a review of the research literature. Clin Invest Med 1983;6: 13 I- 14 1, 10. Rando T. Anticipatory grief: the term is a misnomer but the phenomenon exists. J Palliat Care 1988;4:70-73. Il. Ventafridda V. Palliative medicine: preach. J Palliat Care 1988;4:15.
a new ap
12. Vettese JM. Family stress and mediation in cancer. In: Ahmed P, ed. Living and dying with cancer. New York: Elsevier, 1981:273-284. 13. Mohide EA. Assessing the qualily of cancer pain management. J Pallial Care 1988:4$-15. 14. Kubler-Ross E, On death and dying. New York: Maclnillan,1~~~:8~l I I. 15. Kincade JE. An assessment of palliative care needs in a tertiary care hospital. 237.
QRB 1984;10:230-
One hudwd fatknt~ with advmctd cancer re$wed to a #dative care smite were Defoe PfycAarociald&tressu&g a standard questionnaire, A high incidence q
distress,ati home=carepoblems wQE found. Psychosocial is burns among etch (and th~i~~arn~~its~ with advarscedcaucet and may have a s~~~a~t Ernst ou ~o~~io~ i$o~~~~ cart. Communj~services are 0Jten ve care se&z @rn~~~j~a rnu~t~~c~~~uu~ avouch t speciJiG~~comrn~t~~ about how to combat ~~~~ distressusing spec$c adminrjt&vt and management techniques, J Pain Symptom Manage 1991;6:24-29. +wt, JinatDcrit
In November 9%3@,the Cleveland Clinic Foundation initiated a palliative care service (KS) pilot project to provide symptom control for infants with advanced cancer. The core members of the PCS included a nurse clinician, a part-time social worker, and a part-time medical director. The positive response by referring physicians, patients, their families, and health care professionals, ted to the appointment of a f&time medical director, nurse, and social wwker. la October 1987, the PCS began full operation. The service bases its approach on the palliative care philosophy that neither hastubs death nor proliongs life, but emphasizes
comfort in terminal illness.’ The focus is upon life-affirming activities, enabling each person to live as fully as possible until death. The service is a comprehensive program to support patients and their families though a difficult time.* The PCS is an innovative approach to mana~ment of advanced cancer in a tertiary care facility. Although not restricted to cancer patients nor to the terminally ill, most persons referred suffer from advanced cancer. In this paper, we report data derived from a prospective psychosocial evaluation of advanced cancer patients referred to the PCS.
Role and Function of PalliativeCare Service The PCS now provides both inpatient and outpatient care for cancer patients with symptom m~a~ment problems. All referrals originate from physicians. Once a referral is made,
Q US Cancer Pain Relief Committee, 1991 lpllbtisbedby Etsevier, NewYork, New York
Vol. 6 No. I Junuasy 1991
Palliative Care in Advanced Cs *cer
the patient is reviewed within 24 hr by a physician, nurse, and social worker, all of whom specialize in symptomatic care of advanced cancer. A nurse clinician conducts the initial assessment, including a comprehensive review of the past medical history and present symptom problems. This is summarize in a formal typewritten note in the chart using a standard format. The physician then focuses on control of symptoms. Common problems include pain, nausea, vomiting, lack of appetite, dehydration, electrolyte imbalance, and constipation. Expert advice is therefore immediately available to alleviate problems that are creating major physical difficulties for patients and their families.
A social worker evaluated the patient and family at the same time the physician and
nurse
were focusing on the medical problems. A standard psychosocial assessment form developed
25
for this purpose is completed for every patient within 2 days of the referral. The form is a one page checklist (Table 1) completed by the social worker in a lO- to 15-min interview, This reviews immediate problems the illness is creating for the entire family and provides information about demographic items, financial status, insurance coverage, emotional disposition, family relationships, home-going needs and availability of caregivers. This report describes the results of this evaluation in the first 100 patients treated with our program. No control data were collected reg~~rdil~gthe emotional distress of individuals without cancer; further research is required to document the emotional distress of advanced cancer patients compared to a nonc;mcer population.
b??sults From October 1987 to May 1988, one hundred consecutive psychosocial assessments were
Table f Palliative Care Social Work Assessment Address Phone #
(Nameplate) Age _
B.D.
SpOUSe
Occupation Married ___Sep-D._Financial Resources Disability _ Wages _ Pension _ Welfare _.,_ Financial di~cuIties: Yes -
W--
Single Insurarw~ Coofrage
SSI Other NoI
P&e&s Em&us (Check if signifcant) Depression -_._ Fear ._ Anxiety _ Irritable Guilt -_ Anger Hallucinations _ Lonely PL4mto Provide Crisis Intervention -
Emotional support -
Counseling -
Grief _ Family counseling Marital counseling Counseling ___ Other Pan Holy Family ECF _ Other _.._
Hospital -_.._
Re&rals for Psychiatry Spiritual counseling -
Graph representative of family dynamics
Blue Cross ____ Medicare ____ Aetna ____ None .,._._ Medicaid _ Other Insurance # Medica~/medicaid # Continuib of Caw (check any problem areas) Family capability Caregiver identified Caregiver assistance Caregiver fatigue __.Equipment _ IV.1‘PN,TF Skilled nursing _ Support Transportation _ Housing _ Food preparation _ Co~~u~j~ Referrats
Hospice 24-hr care _ Nursing agency Equipment ACS Ambulance Volunteers -Clinicare Counseling __-.. Meals on Wheels Protective services ..-.-
Miller and Walsh
26
compkted, so all figures quoted are absolute numbers as well as percentages. Of the padents referred 62% were men and 38% were women; 72% were married, 10% divorced, 14% wid-
owed, and 4% had never married. The Cleveland Ctiiic is located in Cuyahoga County, tiia, and 61% were county residents. Another 35% resided in the state of Ohio and 4% were from other states. The age range was 37-89, with a median of 64 yr. Most were between 60
Journal of Pain and SymptomManagement
Table3 Medicai Insurance Coverage Medicareplus additional insurance Privateinsurance Blue Cross Aetna Medicaid Blue Cross plus a~itional insurance No insurance
Medicare responding, five were confused and three were comatose.
Prior to referral,most patients, were not employed (Table 2), The total of retired,Diablo* homemaker, and unemployed equals 83 primary source of finance for 70% of came from a fixed income, Thirty event of the familii relied on a wage earner: in just over half of rhese, this was the patient, whose job would be at risk with the continued progression of disease. pinion percent of ~tients requested financial assistance. Ninety percent had hospitalization insurance (Table 3). Assessment of home-care problems (Table 4) revealed that only 31 patients had more than one caregiverto assistthem, Table 5 details the disposition of those able to leave the hospital. ~~a~~ of the p~blems of jdentifying a caregiver, caregiver fatigue and lack of community resources, 20 patients were not able to go home and were either transferred to another institution or dii at the C~veland Clinic. Of the 92 patients who completed the emotional assessment ineludti in the assessment fbrm (Table l), 34 were affected by three ar ~~~~s* 31 listcpl two, 22 listed one (Table 6); five stated that they were not concerned about any of the emotions listed. Five stated that they had hallu~nati~s during their hospital stay. 0f the eight who were incapable of
TaQIc2 Fiarnrii Status sf Patientswith AdvancedCancer
Patient’s e~~~~nt status
UaeInpIoyed
1%
~rna~ familyincome
savings
I%
Patients with advanced cancer have many p~blems in addition to their physical illness. It is important to address the psychosocial needs of the patient and family as well as their physical care. Families were usually understaffed to care for a seriously ill patient at home. The inability to identify a caregiver or an assistant to the caregiver is a S&WS problem (Table 4). To provide home care for a loved one, the caregiver must deal with his or her own grief as well as handle the anxiety, depression, and/or fear the patient experiences, assist the patient’sactivities of daily living, and su~rvise medicatjon in addition to family administrativeissues, including insurance paper work.’ Thirty-seven patients were evaluated as unable to return home wjth~ut 24-hr assistance, of whom 20 were transferred to other institutions or died in the hospital. Six patients went home Tat& I
Familyand Home Care Problems Only one caregiver identified Caregiverneeds lotions assistance Familyincapable of providing care Need for skilled nursing Caregiverfatigue Need for medical~uipment
PmElemsidentifyinga caregiver” No caregiveridentifieda Tube feeding Transportationdifficulties Intravenous fluids and drugs Foodpreparation problems Homeless
54% 47%
37% 30% 24%
21% 20% 15% 15%
:; 4% 1%
“I.5of the 20 patients who had faculty ~entifying a caregivercould not find anyone to provide care for them.
Vat. 6 No. 2 Januaty 1991
PalEialiveCuw in AdvancedCmmr
Table5 Hospital Diiharge
ford additional help to supplement Di~ition
nursing.
29% 27% 18% 10% 6% 4% 4% 2%
Of the remain-
ing 11 who went home despite co~~cernsabout the families’ ability to provide care, eight returned quickly to the hospital and two went from home to nursing homes; only one managed successfully at home, An adverse professional social work ~sessment, therefo~, appears to be a reliable predictor of home-care failure. The present focus by insurance companies to limit the length of time a patient is in the hospital creates a situation where- families must choose between nursing home and home care. A patient no longer can stay in the hospital to die. Faced with these two options, most patients and families choose home care, unless this is unmanageable. Typically, patients and their families expected their medical insurance to provide home care. Although 37 patients needed 24-hr assistance at home, only six were able to access this care through their insurance. All insurance companies had “skilled care” requirements for home nursing. Skilled care is generally defined as care that requires the technical expertise of a nurse. Each insurance company then specifies separately which technical assistance is included in their definition. In addition, many insurance companies (Medicareincluded) do not provide 24.hr home nursing care (most Aetna policies and some Blue Cross policies do provide this coverage). Because 70% lived on fixed incomes, most were unable to afTable6 Incidence of Emotional Distress Anxious S&depressed Fearful Irritable Lonely AW-Y U-able to assess
their insur-
ance. Because it is not “skilled care,” insurance
Intermittent home nursing care Home without nursing assistance Outpatient hospice care Died at Cleveland Clinic 24-hr home nursing care Transferred to another hospital Nursing home placement Inpatient hospice placement
with around-the-cl~k
27
63% 54% 39% 30% 13% 12% 8%
coverage for home health aides is limited. This often prevented patients obtaining care at home despite their wish, or their families wish to do SO. Medicare does have a provision for 24-hr home care for short-term respite under the hospice benefit, but this is subject to medical review. The rate of payment refusal is high, so many hospices are reluctant to provide it. The low number of referrals to hospice care in this survey was due to a unique sit~t~on in Cuyahoga ~~ounty, where only one small medicarecertified hospice existed at the time of these assessments. Changes in the patient’s physical condition affect the family ~ni~tlci~~lly.Only 17% of patients were elnployed at the time of referral and 27%! were disabled by their disease. This does not indicate the total extent of disease-related changes in employment status, as an unknown number of patients retired early due to their illness. Also, family members were not able to remain employed because of their responsibilities as primary caregiver. The result is that 70% of the families lived on a fixed income at a time of increasing medical expenses. Patients experience emotional distress in addition to their physical symptoms, Anxiety, sadness, fear, and/or irritability are normal for pa-
tients with advanced cancer.4-7 Anxiety can be caused by many factors, including the fear of unrelieved pain, the dying process, and death.’ Only five of the 100 patients stated they were not concerned about any of the emotions suggested. ‘i’he frequency, severity, and multiplicity of emotional distress greatly complicate medical care. Treatment of physical and emotional problems are inseparable; for example, easing pain reduces anxiety, and providing counseling for anxiety may decrease a patient’s
focus on their pain. Our data indicate that the patient with advanced cancer has major psychosocial needs in addition to physical problems. Most simultaneously experience multiple physical symptoms, emotional distress, home management condifficulties, and family cerns, financial fatigue.“~‘” This may be overwhelming. Traditional cancer services do not address these corn-
plex needs. It Specialized care that provides expertise in comprehensive physical and psychosocial management is required. A mul-
28
Miller and Wakh
ddisiplinary palliative care service best addresses these issues.
Given the problemswe have describedabove, and the inadequate community resources available, professbnals must be creative in their appoach. Based on our experience, we have found the allowing adds to h helpful
of physicalsymptoms is a mandatory
medical concerns than the cant tams. “Pain is the most dreaded symptom of advanced cancerJti It changes personality, rns, causes emot~nal lability in paproduces feelings of helplessness and frustration in Family members.‘* Traditional medical and nursing services are not knowledgeable about effective interventions.‘” Surp~ingly, medical oncohqists and radiition the~p~~ receive little or no Formal twining in this area. When an expert in symptom control directs special attention to the patient’spain or other problems, patient and family alike Feel that someone cares about their situation and When pain control is achieved, y the case* this creates positive patient and Familythat add sigly to their quality of life and ability to cope with a terminal illness.
We employ an educational and supportive group meeting attended by all Familymembers, as well as the physician, nurse, social worker, and other interested professionals. Patients may attend unless there are physical, family re~~~ip* or ~ych~o~~l concerns indicating that this would not be in their best interest, or would prevent frankdiscussion (Table 7). Good communication about these issues allows the i%tttilyto cope better with the future.” Family ~fe~~ also increase the numb OFavailable cam&era, because extended family members become aware of the overall situation and will offer to assist. Schedules can be developed that include several family members to distr&
Jawnal of Pain and Symjtam Management
Table 7 CommonFamily Conference Discus&m Points DiagtWk Extent of disease Nature of illness Explanation of symptoms Acuity of disease h@OSiS
Not Resuscitate”or “No Code” status Coals of treatment handling of eme~nci~ Home care issues Availabilitysf palliativecare service Community resources Options for terminal care Financialconcerns Un~ttl~ kgai matters gm~tional needs Methods for discussing situation with children Concerns about coping with a death at home Funeralarrangements “Da
ute the work load. Unfo~unately, in our expe-
rience, it is common For this to be the first opportunity Families have had to discuss future events with professional guidance.
The patient aud Fancilycan Cal1a specilk telephone number any time and speak with a nurse who has knowledge about their disease and care plan so detailed specialist advice is always available. patients and families anxious about returning home take comfort in the availability of this service. Access to the clinical nurse specialist who works directly with the physician and who understands their unique situation, eases concerns about crises that may happen at home. Changes in medication can be accompushy easily and quic~y, preventing inappropriate hospital admissions,
Once the Family is made aware of the patient’s unction and prognosis at the Family conference, counseling about the illness may be needed. Patients’ anxieties about dying must be gently addressed;4*7v14often they are most worried about Family members. They can be reassured that the family will manage despite Feeling a great sense OFloss, FamiIies Feel they are Falling apart, reacting abnormally.‘* A reminder of the normal process of grief, stress, and sadness that accompanies fatal illness helps restore confidence in the family. Communica-
29
tion between family members may need to be restored. Closure of family wounds and healing of relationships can ease worries about the future of the family unit.
1. Lamerton R. Care of the dying: St Joseph HOSpice. Hackney 1973:35-42.
Tmining in HonaeCare
2. Levy M. Palliative medicine: Palliat Care 1988;4: 15
Education about the correct use of medication, management of daily living activities, and any special care requirements reduces family anxiety about home care. The evaluations and help of the nurse, dietitian, and physical and occupational therapists are especially useful in this tgqaining.
a new approach.
3. Howell D. The impact of terminal spouse. J Palliat Care 198632:22-30.
illness
J
on the
4. Walsh TD, West TS. Controlling symptoms in advanced cancer. Br Med J 1988;296:477-481. 5. Bates ‘I’D. A clinician’s view on palliative care, terminal care and ~lIIi~lity of life. Eff Healtl~ Care IQ8fxi . :; 2*‘)1 I_ l-217. G. Crtssileth BR. Psychosocial problems and support ol’ the advanced cancer patient. Rays 1985; 10: ISI134,
Comprehensive care is necessary because of the complex needs of the patient with advanced cancer. The medical situation is constantly changing. Each change brings with it a reminder of mortality. Treatment should include medical management of symptoms, honest communication, counseling, provision of financial and insurance info~ation, and assistance/training for the caregiver. A multidisciplinary palliative care team, which understands the patient and family needs, is the best approach.“*“*“*” More information is needed concerning the many problems faced by the patient with advanced cancer. A better understanding of home-care problems would allow health care resources to be allocated efficiently and appropriately. A study of the impact of insurancvtcoverage on families’ability to manage the cancer patient at home, and its effect on hospital readmissions, would be invaluable. Further study regarding the emotions experienced by patients and family members would improve care.
7. Rand 1‘. C;ricf, dying and death. IL: Research Press, 1934:227-2~~).
Ct~illnpi~i~Il,
8. Kalish, R. Coping with death, In: Ahmed P, ed, Living and dying with cancer. New York: Elscvier, 1981:22 l-239. 9. Gotay CC. Models of terminal care: a review of the research literature. Clin Invest Med 1983;6: 13 I- 14 1, 10. Rando T. Anticipatory grief: the term is a misnomer but the phenomenon exists. J Palliat Care 1988;4:70-73. Il. Ventafridda V. Palliative medicine: preach. J Palliat Care 1988;4:15.
a new ap
12. Vettese JM. Family stress and mediation in cancer. In: Ahmed P, ed. Living and dying with cancer. New York: Elsevier, 1981:273-284. 13. Mohide EA. Assessing the qualily of cancer pain management. J Pallial Care 1988:4$-15. 14. Kubler-Ross E, On death and dying. New York: Maclnillan,1~~~:8~l I I. 15. Kincade JE. An assessment of palliative care needs in a tertiary care hospital. 237.
QRB 1984;10:230-
