Is There Quality of Life in Hospice, Research Paper Example

Abstract

The purpose of this paper is to answer the question: Does being in hospice mean one has to give up quality of life? The work lays out and discusses the results of a number of studies conducted on the subject during the last twelve years. We analyze the nature and constituents of the quality of life in hospice which appears to be twofold involving care after the patients and support offered to caregivers and consists of medical, social, emotional, psychological, ethic, spiritual, financial and other aspects. Overall, the results of the studies indicate that hospice patients tend to live longer and suffer less than outpatients. However, we describe a number of weak points of the hospice system which discourage people from receiving hospice care. We also touch upon several prejudices associated with hospice and their cultural and socioeconomic reasons.

Introduction

Ensuring high quality of life for terminally ill and often aged patients is the main tasks of hospice care as compared to general medical care which includes violent interventions that may be unnecessary in hopeless cases. The idea of a hospice is to give a terminally ill patient peace and comfort and alleviate his / her sufferings.

Still, many researches indicate that there are many misconceptions about hospice care and the access to it is not as wide as it could be resulting in more people dying unnecessarily painful deaths.

Hospice healthcare is presumably the most difficult sphere to review and estimate because despite all the achievements in medical knowledge and technology, we all die and sometimes the process is accompanied by bitter sufferings. Although there are certain difficulties in estimating the quality of life encountered by researched which are to be mentioned later, we can picture the situation quite comprehensively. First of all, it should be mentioned that in order to provide higher quality of life in hospice one has to address two aspects: (a) giving medical and emotional support to patients; (b) helping caregivers, i.e. the patient’s close people who take care of him or her. Each aspect can be subdivided into a number of items including physical, psychological, philosophical, social etc. help. In this paper, we will investigate some peculiarities of research work in this sphere, the requirements for quality of life (what it should be like and what it consists of), and, finally, the components of hospice patients care (what it takes to provide quality of life in hospice).

Methodology

This work presents the results of a number of research works carried out on the subject of quality of life in hospice. The research works are based mainly on the results of questionnaires completed by hospice patients, caregivers and personnel. The methods of estimating quality of life of the patients included Likert/linear analog self-assessment scales. The patient’s physical state was measured according to Karnofsky Performance Scale and their mental state – according to Mini-Mental State Evaluation.

A research by Shah M. et al. was an example of a simple questionnaire based on asking the patients about what bothered them most and analyzing the results by statistical methods.

National statistics are also widely used in this work.

All the material was analyzed, synthesized and presented in chronological order of reports and according to different aspects of quality of life.

Literature Review

This work is based on medical researches into hospice care and national statistics. The researches cover both the background of hospice care and the current situation. They focus on overall effects of hospice care for patients and caregivers and determine the most important constituents of quality of life in hospice.

Quality of Life in Hospice Patients, a research carried out by M. Bretscher et al, presents the results of comprehensive clinical observations in hospice patients which included a comparative evaluation of their state and progress on the part of the patients, caregivers and clinicians. The authors pointed out a dramatic difference in the estimation of quality of life in each of the cases. The research was based on a wide variety of methods designed to estimate quality of life.

The Past and Future of Palliative Care by K. Foley presents an overview of the tasks faced by hospices and stresses the idea of a hospice as an opportunity to provide quality of life to terminally ill patients instead of prolonging the sufferings associated with medical intervention. According to the author, the USA need a developed system of national standards for quality of life in hospice – a measure that will entail increasing professionalization in the field and developing specialties in palliative medicine.

The Need to Revise Assumptions about the End of Life by M. Bern-Klug et al analyses the results of the SUPPORT study (The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) of 1995 which demonstrated low quality of life of seriously ill patients whether treated at home or in the clinics. Leaning back on the criteria of the SUPPORT study, the authors worked out implications for hospice workers who should serve as “context interpreters” and inform patients and caregivers of the perspectives left to them by the illness and the recommended course of actions. Additionally, hospice workers should recognize pain and counsel people on the methods of pain relief and possible risks such as addiction.

The Ethical Imperative for Access to Hospice Care, a part of a larger study on hospice care published by The Hastings Center in 2003, enumerates the values in care of the dying such as compassion in caregivers, trust to healthcare providers, spiritual and existential issues, family and societal obligations. The authors stress the importance of supporting these values as well as making hospice services reasonable in the aspect of finance.

Access to Hospice Care: Expanding Boundaries, Overcoming Barriers by B. Jennings et al. investigates the statistics on the relative number of people receiving hospice care and people dying needlessly painful deaths. The research is based on the assumption that hospices do provide quality of life for their patients but the access to them is too small. The authors offer a new vision of hospice as a “community hospice” or “comprehensive hospice center” and, respectively, suggest a course for reform aimed at adopting a more flexible organizational form which would allow access to hospice care to a larger proportion of population and ensure better quality of life for persons with chronic and degenerative diseases.

Race, Ethnicity, and Culture, another part of a comprehensive study on hospice care, provides important insights into boundaries set by race and nationality of a patient in hospice care. It explains cultural background behind the patient’s readiness to accept palliative care and investigates some disparities in ensuring access to hospice care and quality of life in hospice.

What the People Would Want If They Knew More about It: A Case for the Social Marketing of Hospice Care by J. Stanley is a research which resulted into formulating two capital concerns of hospice patients: (1) not being a burden to their families and (2) being troubled with the process of dying more than with death itself. The author suggests that hospice care should be remodeled to meet these concerns and people should be informed that their primary needs will be met in hospice.

Examining Variables Related to Successful Collaboration on the Hospice Team  by D. Parker-Oliver et al. stresses the importance of interdisciplinary collaboration in ensuring quality of life in hospice care. The authors claim that collective efforts of various professionals provide comprehensive care that meets all the needs of patients and their families.

Ethical Issues for Hospice Volunteers by P. Berry reflects some aspects of interdisciplinary collaboration emphasizing the role of volunteers in hospice care and stressing potential ethical problems in their communication with patients and their families including hastening death and suicide-related issues.

What Bothers You Most? by M. Shah is a research into unmet primary needs of hospice patients. According to the research, 44% of patients reported physical distress, while 16% were in a difficult emotional state; 15% expressed concerns about the dying process and death, 12% complained about loss of function and normalcy, 11% were dissatisfied with the location, and 9% criticized medical providers or treatment.

Discussion

In the late 1990-s, SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) – a research on hospice healthcare – showed that hospice patients were far from getting the care needed for dying patients. The research was aimed at improving decision-making in case of the terminally ill which was primarily associated with relieving their pain and reducing suffering. Still, later research conducted by M. Bretscher et al. showed that the SUPPORT missed on some positive facts about hospice healthcare. An extensive National Hospice Study of 1998 worked out a complex of measurement tools to estimate different aspects of quality of life in hospice.  These included performance status, patient’s awareness, emotional and social quality of life, satisfaction with care, pain, and global quality of life. However, the technique applied by the researchers seemed imperfect as the results appeared discordant. For instance, a reduced performance status was not accompanied by a decline in social and emotional quality of life and a lowering pain level did not correlate with emotional crisis. Other studies on the subject also indicated that psychological state of a patient does not obligatory correspond to the physical one. It means that such multilateral notion as quality of life must be addressed and estimated in as great number of aspects as possible to reveal their interconnection. Such comprehensive approach will benefit the hospice personnel indicating the elements which make up the quality of life.

In order to paint a comprehensive picture of such a subjectively estimated issue as quality of life, it is preferable that the information be obtained directly from patients. The problem is that not many hospice patients are ready to respond to the questionnaire regularly due to their often rapidly deteriorating health. Thus in the National Hospice Study 50% of the patients in 2 weeks before death and 80% of the patients in the week before death could not complete the questionnaire. And it goes without saying that if the interview presents even the slightest harmful effort to the patient, it should not be taken. The hospice staff usually relies on the caregivers for decision-making in such cases, it would be natural for the researches to address them as well. However, the responses obtained from caregivers tend not to correspond with the patients’ answers. The pilot study performed by M. Bretscher et al. was mainly concerned with the correlation between patient’s perception of his/her quality of life and its perception by caregivers and staff.

The questionnaires suggested to patients were to measure their physical and emotional distress caused by a terminal illness, their emotional state and relationship with God. They also were to characterize the patient’s perception of life’s purpose and satisfaction (spiritual well-being) irrespective of religious aspect. The assessment of the patient’s physical state was measured according to Karnofsky Performance Scale while his/her mental state was measured with the help of Mini-Mental State Evaluation. The patients, caregivers, and personnel also completed Likert/linear analog self-assessment scales estimating the quality of life of the patient.

The results obtained from caregivers were more varied and had a wider range of scores in comparison with the patients’ assessment of themselves. The caregivers rated all the components of the quality of life except for existential and religious lower than the patients. This tendency is especially visible in case of overall assessment. Hospice staff ratings, however, appeared closer to the patients’ ones but revealed the tendency to overrate (if we assume that the patient’s assessment is the most correct). How can the fact that caregivers view the patients’ state more negatively than the patients be explained? The researchers think that the reason is a shift in the frame of reference. While caregivers may evaluate the patients’ quality of life from the patients’ pre-illness frame of reference, the patients seem to be quicker at adopting a new frame of reference with lower expectations after the terminal diagnosis. This phenomenon is an indication of an important issue in hospice care faced by the personnel – the problem of helping the caregivers come to terms with the illness of their loved person and bringing peace in the process of dying through proper preparation of both the patient and his/her relatives.

The overall results of the pilot study conducted about a decade ago showed that emotionally hospice patients had less vigor and activity scores and slightly lower fatigue and inertia rates, which meant that they were less vigorous and active and suffered from greater fatigue and inertia in comparison with outpatients. The outpatients also had higher spiritual quality of life. However, the hospice patients showed less anger and hostility and slightly less confusion, bewilderment, tension, anxiety, depression and dejection.

The key question of the total reasonability of hospice care was addressed by a study published in the March 2007 issue of the Journal of Pain and Symptom Management. The study was financed by the National Hospice and Palliative Care Organization and conducted by NHPCO researches in cooperation with the consulting and actuarial firm, Milliman, Inc.

In the beginning of the twenty-first century, the researches indicated that, in general, hospice care does prolong the lives of some terminally ill patients and can provide quality of life.

The results for the patient population studied allowed to calculate the average of 29 days of staying alive longer for hospice patients than for outpatients. It means that patients who received hospice care survived a month longer than patients in the same initial condition who refused to go to hospice.

The process of study included selecting 4,493 terminally ill patients with either congestive heart failure or cancer of breast, colon, lung, pancreas, or prostate. The difference in survival periods between hospice patients and non-hospice ones was analyzed then. The data were obtained from the Centers for Medicare and Medicaid Services and represented a statistically valid five percent sampling from 1998-2002.

Four of the six disease categories studied demonstrated longer length of survival. Hospice care effect seems to have been the strongest in case of patients suffering from congestive heart disease. With them, the mean survival period was prolonged in hospice from 321 days to 402 days. The mean survival period was significantly longer in case of hospice patients with lung cancer (estimated 39 days), pancreatic cancer (21 days) and colon cancer (33 days).

“There’s an inaccurate perception among the American public that hospice means you’ve given up,” said J. Donald Schumacher, NHPCO president and CEO. “Those of us who have worked in the field have seen firsthand how hospice can improve the quality of and indeed prolong the lives of people receiving care. Benefits of hospice have been reinforced by positive stories like that of Art Buchwald who seemed to thrive under the care of hospice.”

The researches summed up a number of factors that may have become reasons for prolonging lives among hospice patients. The factors are as follows:

1. Patients who are already weakened can avoid being subject to over-treatment if they opt for hospice care;
2. Hospice care allows better monitoring and treatment to patients.
3. Hospice also provides in-home care from an interdisciplinary team which focuses on the emotional needs, spiritual well-being as well as physical health of the patient.
4. Special attention is paid to family caregivers who get necessary support and training.
5. Hospice care proves to increase the patient’s desire to continue living and makes them feel less of a burden to their families.

“There is a perception among some healthcare providers that symptom relief in hospice, especially the use of opioids and sedatives, could cause patients to die sooner than they would otherwise. This study provides important information to suggest that hospice is related to the longer, not shorter length of survival – by days or months – in many patients,” said Dr. Stephen Connor, NHPCO’s vice president of research and international development, and lead author of the study. “This additional time may be valuable to patients and families to give more time for resolution and closure.”

However, there is a number of weak points and problematic issues still associated with hospice care both in Europe and in the USA that demand taking urgent measures.

Modern American studies reveal a difference in the quality of life of white hospice patients and those who belong to racial minorities. The difference is routed in the perception of dying by each culture and also, unfortunately, in the racial divide in the treatment of the patients on the part of the personnel. Terminally ill Afro-American people are in the majority strongly opposed to hospice care because of their unwillingness to resign themselves to death and the mistreatment they suffer their. (The researches have studied many racial groups, but the most eloquent results were obtained from African Americans.)

It should, however, be mentioned that the tendency is typical not of all minorities and even not of the most of them. Moreover, it is not restricted to the minorities only. All Americans turn to hospice services and prepare wills in advance less frequently than they are believed to have potential to. The above also does not mean that the minorities reject any palliative care. Many of them die peacefully in hospices surrounded by their families.

But for the majority agreeing to hospice admittance or an act of writing a will means sacrilegious abandonment of hope. Moreover, many representatives of minorities are afraid they will not be provided with proper care in comparison with the whites.

Such fears are not groundless. In general, the achievements of hospice and palliative care are not delivered to the minorities in full. The statistics shows that only 7.5% of hospice patients are black and only 4.8% are Hispanic, which is less than half their representation in general population. A number of researches have shown that the majority of African Americans and other minorities choose to fight fiercely in the face of death and are strictly averse to hospice.

In effect, it means that the African Americans opt for more aggressive medical care at the end of life at the expense of the relief that could be offered to them by palliative medicine. Consequently, they often die more medicalized deaths, usually in hospitals, suffering from unbearable pain, with ventilators and feeding tubes, after being resuscitated or getting extra rounds of chemotherapy, dialysis or other likewise procedures.

An extensive study that addresses the issue is a current Harvard project funded by the National Cancer Institute that is to cover about 800 terminally ill cancer patients in Massachusetts, Texas, Connecticut, New Hampshire and New York. The study had already found that African Americans are two or three times as likely as white people to demand for everything possible done to keep them alive, prolong their lives for at least several days at the expense of suffering and dying in intensive care.

The tendency has the whole system of routs including socioeconomic, cultural and religious factors. It actually appears that quality of life for the African Americans at the end of life does not mean the same as for the white and what is generally deemed unnecessary and counterproductive  during the last days of the patient’s life may be desirable to others.

The socioeconomic explanation of the phenomenon lies in the fact that, according to the study, people with better financial resources and more access to treatment are roughly twice as likely to feel comfortable to discontinue treatment as people of lower income.

It should be stated that it is not merely the race that influences people in this case. Race should be viewed here as just a complex for economic, educational and access differences.

The phenomenon can also be partially explained by the fact that doctors do not communicate in one and the same way with patients from different backgrounds. For the minorities, especially for poor and less educated people, it may mean they are kept in the dark about the seriousness of their illness and the effect of further treatment. They are also not informed fully about possible benefits of hospice or palliative care. Some of the patients are not good enough at English, and the language barrier presents another difficulties since the medical personnel do not want to take trouble to get the message across.

However, even making due allowances for the socioeconomic factors, minorities still are bound to express different preferences than whites when it comes to end-of-life care. A crucial study conducted by Blackhall of 800 elderly hospital patients in Los Angeles revealed that African Americans were twice as likely as whites to say they want to be kept alive even in hopeless cases, such as irreversible coma.

A preliminary analysis of data collected for the Harvard study from 481 subjects in Boston; Dallas; New York City; New Haven and West Haven, Conn.; and Concord and Exeter, N.H. support the above statistics. according to this study, about half the African Americans interviewed expressed a wish for receiving life-prolonging care, which is three times the rate among whites.

Another aspect is the fact that African Americans are used to being mistreated in healthcare during their lives and do not believe in the quality of life in hospice. Throughout their lives the minorities suffer from disparities in the health care available to them.

Even if the problem of racial discrimination in healthcare has been combated, for some the fear may be still there from historical mistreatment, such as the infamous Tuskegee syphilis study in Alabama, which denied African American people treatment for the disease.

With the emotional burden of having no hope already upon them, terminally ill African Americans dread getting into hospice. Moreover, the minorities are far less likely to prepare living wills or sign do-not-resuscitate orders as the studies have revealed. A 2002 University of Pittsburgh study of 3,747 nursing home patients all over the USA found that blacks were one-third as likely as whites to have a living will and one-fifth as likely to have signed do-not-resuscitate orders.

Another important factor is religion. The Harvard study published in February, 2007, and based on the data obtained from 230 patients showed that (a) religious people were much more likely to be willing to keep fighting at the end of life; and (b) religion is often an all-important factor for the minorities.

Since there has been less research on the attitudes of Hispanics and other minorities, we have to rely on the judgment of hospice workers and palliative-care specialists who report the same trends in general with every group having unique beliefs. Latinos and Asians are likely not to want to tell family members that their illnesses are incurable for fear of aggravating their condition. For some, dubious immigration status prevents the families from taking legal steps to enroll their loved ones in hospice programs.

For many minorities, the idea of taking maximum care after their loved ones and struggling for their lives runs in the blood. Otherwise they feel they betray them and become outcasts in their society.

To summarize this part, it should be said that measures should be taken to make the Americans more comfortable with hospice care. First of all, of course, it applies to providing better quality of life for patients, especially in the emotional sphere. The feeling of insecurity is still widely associated with hospice. Moreover, doctors and nurses must be more aware of cultural differences of their patients to avoid conflicts so painful for patients and caregivers. In this respects, good death should not be stereotyped. The notion and, correspondingly, provided care and treatment must be flexible to ensure spiritual and emotional comfort for the patients.

Many medical experts still argue that suffering should not be viewed as redemptive and noble making people reject the relief of hospice or palliative care as is often the case.

The hospice personnel should also demonstrate tact, empathy and the highest moral standards in addressing the sensitive issues of informing patients and caregivers about the patients’ condition. However, too many doctors feel unable to be in constant contact with suffering people and choose not to get involved.

It is generally considered that total honesty is the only option for doctors in case of terminal illnesses. Although this perspective is hard to accept, hospice patients often want to know how much time they have ahead to spend it with their loved ones, prepare their last wills and testaments, rethink their life and prepare for their last days both financially and psychologically. However, the situation is different in case of terminally ill children. They are the patients who might not be told the whole truth not to increase their fear and sufferings.

Speaking of the psychological atmosphere in hospice, we cannot but mention another delicate ethic issue – legal assisted suicide as an option open to the dying person in, for instance, Netherlands, Oregon and Washington State in the USA. Patients can choose to end their lives through lethal injections. The pressure upon the doctor in this case is tremendous. Not only should the picture of disease be predicted accurately, but also the doctor should be open to discussion and supportive.

The positive aspects of hospice care include reduced fears as a result of relieved pain through palliative care. Apart from fear for suffering, hospice helps to alleviate fear of being abandoned and presenting burden to the caregivers. Hospice patients tend to feel more socialized and not suffer from isolation. Experienced hospice personnel are well aware of these fears on the part if the patients and address them directly, which may account for a better correlation between the staff’s and the patients’ estimation of the quality of life.  Immediately preceding the patient’s death, the caregivers’ estimation of his/her quality of life also would become closer to the patient’s. It is indicative of the successful psychological support provided to caregivers by the hospice staff to help them come to terms with the looming bereavement.

The drawbacks of hospice care often result from an increasing pressure upon the personnel to lessen the time spent with patients, especially when active medical intervention is no longer needed. However, it is felt that in such a specific environment as hospice the priorities of medical care are to be reconsidered. It appears that hospice patients need no less empathy and feeling of connectedness than medical care. But in reality they mainly get cold and impersonal laboratory service. The focus is on illnesses rather than people, and profit rather than healing.

In conclusion, the researches suggest that medical schools should put more emphasis on psychological aspect of hospice care in palliative medicine courses. Also, clinical residency programs should teach residents to treat patients with incurable illnesses so that the quality of their lives would be optimal. And finally, the financial side of the accessibility and quality of hospice care should be and is being addressed by policy-makers.

Conclusion

The positive aspects of hospice care include reduced fears as a result of relieved pain through palliative care. Apart from fear for suffering, hospice helps to alleviate fear of being abandoned and presenting burden to the caregivers. Hospice patients tend to feel more socialized and not suffer from isolation. Experienced hospice personnel are well aware of these fears on the part if the patients and address them directly, which may account for a better correlation between the staff’s and the patients’ estimation of the quality of life.  Immediately preceding the patient’s death, the caregivers’ estimation of his/her quality of life also would become closer to the patient’s. It is indicative of the successful psychological support provided to caregivers by the hospice staff to help them come to terms with the looming bereavement.

The drawbacks of hospice care often result from an increasing pressure upon the personnel to lessen the time spent with patients, especially when active medical intervention is no longer needed. However, it is felt that in such a specific environment as hospice the priorities of medical care are to be reconsidered. It appears that hospice patients need no less empathy and feeling of connectedness than medical care. But in reality they mainly get cold and impersonal laboratory service. The focus is on illnesses rather than people, and profit rather than healing.

The researches suggest that medical schools should put more emphasis on psychological aspect of hospice care in palliative medicine courses. Also, clinical residency programs should teach residents to treat patients with incurable illnesses so that the quality of their lives would be optimal. And finally, the financial side of the accessibility and quality of hospice care should be and is being addressed by policy-makers. Many researches point out that the nature of modern hospices should be more community-oriented and should involve more interdisciplinary collaboration given to a wide diversity of needs of patients and their families.

In conclusion, we would like to say that the quality of life in hospice is a multidimensional problem. It involves medical, financial, psychological, social, emotional, spiritual etc. aspects which can only be addressed by the most qualified and committed personnel. In general, hospice care does alleviate sufferings and prolong the life of terminally ill patients. However, hospice patients often suffer from the indifference of the staff in the most emotionally challenging period of their lives when they need as much feedback as possible. The most outrageous examples include cases of racial discrimination. The medical personnel also often appear to lack the necessary qualifications. Much is to be done in the sphere of financing hospice care and making it more accessible for the Americans.

References

Bern-Klug, M., Gessert, C., Forbes, S. (2001). The Need to Revise Assumptions about the End of Life: Implications for Social Work Practice, Health and Social Work, 26 (1), 38-43.

Berry P. (2009). Ethical Issues for Hospice Volunteers. American Journal of Hospice and Palliative Medicine, 25 (6), 55-67.

Bretscher, M. (1999). Quality of Life in Hospice Patients. Psychosomatics, 40 (5), 309-313.

Foley, K.M. (2005). The Past and Future of Palliative Care. The Hastings Center Report, 35 (6), 42-47.

Hastings Center. The Ethical Imperative for Access to Hospice Care. The Hastings Center Report, 33 (2), 13-19.

Hastings Center. Race, Ethnicity, and Culture. The Hastings Center Report, 33 (2), 39-45.

Jennings, B. (2003). Access to Hospice Care: Expanding Boundaries, Overcoming Barriers. The Hastings Center Report, 33 (2), 3-10.

Parker-Oliver, D., Bronstein, L.R. (2005). Examining Variables Related to Successful Collaboration on the Hospice Team. Health and Social Work, 30 (4), 279-285.

Shah M. et al. (2008) “What Bothers You the Most?” Initial Responses From Patients Receiving Palliative Care Consultation. American Journal of Hospice and Palliative Medicine.American Journal of Hospice and Palliative Medicine, 25 (2), 88-92.

Stanley, J. (2003). What the People Would Want If They Knew More about It: A Case for the Social Marketing of Hospice Care. The Hastings Center Report, 33 (2), 22-32.