Palliative care approach in patients with HIV/AIDS

Summary of the doctoral thesis in Medical Sciences submitted at “Carol Davila” University of Medicine and Pharmacy, Bucharest, Romania, 2012

Scientific Coordinator: prof univ dr Adrian Streinu-Cercel
PhD by Matilda Ileana Bordușelu, MD, family physician, competence in palliative care

Address for correspondence: e-mail:

The beginning of the HIV/ AIDS epidemic in the ’80s and ’90s brought new challenges in infectious disease services: young patients with a devastating disease who died after a long illness. At that time, infectious diseases and palliative care services together helped these patients. Both specialties have learned from each other, and both from their patients: patients with HIV/AIDS have demanded more autonomy and participation in decision making, these principles being actually part of the ‘palliative spirit’ and dominating the entire practice throughout the beginning of the 21st century. The infectious disease services have taken the concept of multidisciplinary and of holistic approach to the patient from palliative care.

With the introduction of antiretroviral therapy, the place of palliative care in HIV/AIDS patients care has been questioned. The infectious disease doctors have resumed their natural position to fight death, trying somehow to erase from their past that time when HIV infection made the medical world questioned about its limits.

Being a disease of the modern age, HIV infection has been attacked with the most modern means of science. However, the sick person’s care is above the biomedical sphere, toward which the infectious disease doctor has successfully gone. On the other hand, the palliative culture continues to find its place near this patient who is aging faster than the general population and whose pathology is extremely complex. These patients’ quality of life, although a lot improved since the introduction of antiretroviral therapy (HAART), still remains a burning issue.

The first chapter of the general section in the thesis is an introduction to the concept of palliative care. Several definitions of palliative care are presented in the second chapter.
The World Health Organization (WHO) defines palliative care in 2002 as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (…).”
Further, the WHO definition of palliative care specifies that the palliative care “enhances the quality of life, and may also positively influence the course of illness. It is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage distressing clinical complications.”

The next chapter deals with the concept of pain and suffering, starting from the communications made by Dame Cicely Saunders, founder of modern palliative care movement. Suffering changes behaviour, it opens another dimension of existence, which makes the patient unrecognizable even by his closest ones.
It is within this context that Elisabeth Kübbler-Ross described the five stages of loss (thus being understood any loss suffered by a person who has a chronic condition, namely a decrease of autonomy, a mourning – of their own life or of the life of their beloved ones): denial, anger, bargaining, depression and acceptance.
The concepts discussed in this chapter have led to changing the perception about the patients situated towards the end of their life or toward the end of their resources. A multi-disciplinary team is required to approach the suffering in its multiple aspects.

In chapter 4 the role of the multi-disciplinary team and the principles of palliative care are presented and chapter 5 describes the palliative care situation in Romania and the organization of palliative medical services.

Chapter 6 deals with palliative care in patients with a chronic disease. The different dimensions of a chronic disease are described, i.e. historical, anthropological, social, psychological, and medical ones. Next the acceptance of a chronic disease is analysed: the acceptance by the patient and the acceptance by the society. Next coping and resilience are discussed, paying particular attention to understanding the HIV/AIDS patients’ behaviour and adherence to treatment.
Quality of life of patients with a chronic disease is a multi-dimensional, subjective, ethical concept. Most clinicians associate quality of life with symptom control, physical functions, psychological well-being, and the meaning and fulfilment of life. In the context of clinical trials, the interest in quality of life as a global concept is still rare in Romania. Most attention is given to goals as pain relief or dyspnoea reduction.

The relationship between doctor and patient often focuses on the announcement of the diagnosis, the therapeutic regime and its long-term monitoring. The communication between doctor and patient and its challenges (defence and coping mechanisms) is dealt with as well.

The chronic care model is considered as the reference unit care organization for treatment of patients with a chronic disease, but this is not easy to realise in practice. We also discuss the advantages and disadvantages of using information technology in health (e-Health), especially for palliative care and patients with HIV/AIDS.

The use of information technology in medicine is in full development and it is also going to represent a new stage in the doctor-patient relationship. The physician’s role in current healthcare systems already established will make the difference in the future:
“To think of medicine as a practice exercise for individual care, which would assume the relevance of scientific and technical reference system and the need for action in a registration of existential dimension, could be a way to not delve into the systematic objectification and subsequently into the instrumentalization of bodies assigned. Hence, the doctor may be liable to assume, individually or collectively, a mediator position between science and being. ”

The next chapter is about the physiopathology and the management of various symptoms encountered in palliative practice. Due to their spread in modern society and their impact on health care and on the doctor-patient relationship, we considered it was necessary to dedicate a special chapter to the use of alternative therapies by our society.

Chapter 9 deals with human immunodeficiency virus infection, here being found some of the major aspects of HIV infection. Clinical symptoms and drug interactions are the central issues here because those are the main points where infectious diseases meet palliative care.

Next the special part of thesis is presented in 6 chapters and focuses on empirical work on quality of life.
In the first 15 years of the HIV/AIDS epidemic the palliative care approach was leading. After the HAART introduction and with its development, the presence of palliative care has been increasingly considered less necessary. In this thesis, I tried to restore the palliative care, to highlight the benefits that a palliative approach together with the etiological one could bring to people living with HIV/AIDS.

The main objectives here are the multi-dimensional assessment of quality of life in patients with HIV/AIDS, the determination and the assessment of the associated factors that may influence these people’s quality of life, the association between quality of life and adherence to HAART and the need for the palliative care approach in these patients.

The study was conducted in a group of 60 young people aged between 19 and 25 years, diagnosed with HIV/AIDS for more than 10 years. They have a rich history of pathology, all are HAART multi-experienced and they have variable tolerance and adherence to the treatment. Nowadays, they are representing the patients with the longest worldwide survival, the study being significant for the long-term future survivors.
For an accurate assessment of the studied parameters, a similar study was performed in a parallel group of 20 people with the same age without HIV infection in a state of apparent health.

As evaluation methods were used:
♦ a structured self-report questionnaires (Medical Outcomes Study Short Form SF-36 – which assesses quality of life, PEDsQLTM Multi-dimensional Fatigue Scale – assessing fatigue, -the numeric analog scale, the visual analog scale of pain (VAS), DN4 neuropathic pain scale, Memorial Symptom Assessment Scale MSAS – which assesses symptoms, the adherence test to anti-retroviral treatment and through hetero-assessment tests: the Hamilton Rating Scale test for depression, the screening test for AIDS Dementia Complex – International HIV Dementia Scale (IHDS), autonomy test – Karnofsky Performance Status Scale).
♦ a semi-structured interview (patients guided on interest subjects). For the patients with HIV infection, Hamilton scale was adapted, by excluding questions regarding the digestive and genital symptoms, as well as the questions about weight loss, questions that might interfere with HIV-related symptoms. A questionnaire with 14 questions was constructed and the threshold of significance of depression in the key of interpretation was modified accordingly.

The adherence to anti-retroviral treatment is difficult to predict, knowing that adherence decreases over time. Neither measuring adherence in clinical practice is easier nor there is a perfect method in this respect.
Adherence to anti-retroviral treatment questionnaire that we used is a questionnaire developed and used nationwide. Certainly, the patients will not tell the truth if they suspect that somebody could use it against them. Interviewer confidence is essential. Ambivalent patients with arguments for and against anti-retroviral therapy and with fluctuating adherence over time were the most difficult to investigate.
To avoid errors caused by adherence- resistance test, correlations with laboratory investigations (CD4 count and viral load), with the results of psychological examinations made in INBI “Prof. Dr. Matei Bals” and with direct interview results were performed.
Patients were categorized into “adherent” (those with good and very good adherence) and “non-adherent” (those with poor, medium or low adherence).

From patients medical records we used: medical history and demography, current treatment, previous antiretroviral regimens, HIV-related diseases, biological and immunological status, the viral load, psychological exams over time, social and professional status.

Most studies in the literature show that, after the introduction of HAART, the quality of life of people with HIV/AIDS remained below the general population’s one. Similar to the data from the literature, we found that the HIV/AIDS patients’ quality of life was significantly lower than in the general population. Impaired quality of life was correlated with pain severity, with fatigue, with depression, as well as with the frequency of all symptoms together and with restrictions in the daily activities.

The number of symptoms reported by patients with HIV/AIDS in the MSAS questionnaire ranges from “no symptoms” (4 patients) to over 20 symptoms (3 patients). Linear regression analysis showed a negative correlation between the number of reported symptoms and HIV/AIDS patients’ quality of life and a positive correlation between fatigue severity on PEDsQL scale and the number of symptoms reported. We also found a significant association between the number of symptoms reported by MSAS and adherence to treatment. Based on these outcome we presume that increased adherence to treatment decreases the number of the reported symptoms, but, at the same time, it is possible that, because of the large number of symptoms, patients’ ability and willingness to undergo anti-retroviral therapy decreases.

Although in the literature no correlation was found between viral load and quality of life, we found a strong negative correlation. Between the CD4 score and quality of life we found a statistically significant positive correlation as found in the literature.

In our study, good and very good adherence to anti-retroviral therapy correlated with quality of life, with a low number of symptoms and a medium level of fatigue.
The information about the anti-retroviral regimens that have benefited patients with HIV/AIDS over time was collected from the archives of “Prof. Dr. Matei Bals” Institute for Infectious Diseases. Univariate ANOVA analysis revealed the higher number of treatment regimens was statistically significant associated with a lower quality of life. By means comparison, we found that patients with quality of life of lower than 80 had an average number of treatment regimens of 6 (sd 2.7), while patients with a quality of life above 80 had on average 4 treatment regimens (sd 2.5).
Based on these findings we assumed that patients with different treatment regimes had a lower tolerance to anti-retroviral medication, viral drug resistance and/or lower treatment adherence. But also we see the medical team’s efforts to help these patients in their battle with the disease.

In patients with HIV infection, a high quality of life score occurred in 65% of patients who were employed or who were students, compared to 41% of the unemployed. This seems a vicious circle: the presence of physical or mental symptoms increase patients’ difficulties to find a job or to pursue some form of education, and at the same time, the fact that they are not involved in similar structures with their healthy age group increases the impact that the disease has on them.

Patients with chronic diseases should be permanently evaluated to find out what pain they have. 22% of patients with HIV/AIDS in our study had severe pain (chronic pain or painful paroxysms valued at ≥ 7 on a numeric analogue scale), in comparison with the control group, where severe pain was absent. For the whole group of 80 patients, we found that the moderate and severe pain influenced fatigue at the threshold of 75 points on PEDsQL scale and quality of life at the threshold of 80 on SF-36 scale.
Depression is the secondly identified quality of life affecting factor which is correlated with fatigue and with low adherence to treatment.

By evaluating factors influencing quality of life, we believe that in patients with HIV infection fatigue is often an expression of an incompletely treated of chronic pain or/and a hidden depression. Proper management of pain and depression, as well as the treatment of fatigue can lead to the improvement of quality of life and to an increase of treatment adherence.
Rating scales of depression and fatigue should be part of a basic assessment of all patients with HIV/AIDS in surveillance. Rapid pain evaluation and treatment are already elements of global approach offered to patients, but their improvement and, especially, their post-treatment re-assessment must be permanently kept in mind. Progress in the social integration of patients with HIV/AIDS continues to be a priority.
Our study indicates that the identification of cognitive fatigue should be followed by complex neuro-cognitive testing, so that AIDS Dementia Complex is caught early and proper adjustment of treatment is operated in patients who present it.

As a result of the pain detection, depression and fatigue as major factors influencing quality of life along with the direct effect of HIV, a conceptual model was designed which showed that these factors are interrelated in the beginning of the disease, but become independent factors over time, reaching to a vicious circle in which they maintain contextual impaired quality of life quality in some patients. Interventions in these determinants by palliative care approach, might achieve better effects on quality of life.
By the palliative care approach we primarily refer to the effects of disease on the sick person and not to the causes of the disease. By tackling any of these three factors, we have the opportunity to improve quality of life, which has become one of the main arguments of the palliative care approach to HIV/AIDS.

To identify people with HIV/AIDS who need a palliative care approach, we take into account the meaning that these people attribute to disease and treatment, meaning that this determines their attitude to the disease. We defined four categories of patients, depending on denying/accepting the disease and different coping strategies that they have adopted. Structurally, these patients are different, so it makes sense to apply different approaches to them.

The classification for the need for palliative care is:
● Group IA: people situated in this group accept the disease and have emotional control of disease; palliative care can be justified only by managing symptoms (if any exist);
● Group IIA: they do not accept the disease, but they have emotional control of it. Denial is strong; refusal of care is often present, causing conflicts with the medical staff. They may accept symptom management, their amelioration can sometimes bring an improvement in communication.
● Group IB: they accept the disease, but they have no emotional control and group IIB: they do not accept the disease and they have no emotional control. Both groups have an indication for palliative care treatment because their emotional problems can be mostly identified with the three indirect determinants of quality of life (pain, depression, fatigue). Whether or not their current manifestations are the consequences of somatic impairment, people situated in these groups need complex approach (global) and accompaniment, which are the premises of the palliative approach.

Using a Stapel scale, we found in our group of patients with HIV/AIDS people falling within each of the four defined categories: 33 patients in IA, 9 patients in IB, 8 patients in IIA, and 10 patients in IIB. We also found that people may migrate from a one category to another. The best average quality of life was recorded in group 1A.
The differences between the 4 groups in terms of adherence to therapy are significant: the adherence of the all groups is quite low, except the patients in group IA (representing 55%).
The palliative care approach could improve these people’s coping and could stimulate the transition towards an ‘acceptance’ of the disease. Palliative care is an accompanying medicine that helps the patient to overcome the difficult times of illness, starting right from its announcement. Mourning after previous life (before pre-announcement illness or disease), facing to multiple losses (in terms of social life, psychology, family, health, autonomy) also requires a long-term accompaniment. The presence of a palliative care team is also needed during the difficult decisions (investigation and aggressive treatment, stopping antiretroviral medications, prophylactic therapy) or when the patient is unable to make decisions by himself.
Using the anamnesis and simple questionnaires (VAS, PEDsQL and Hamilton), splitting into groups of attitude could be done easily in the departments that look after people with HIV/AIDS and could help the palliative approach decisionmaking of certain patients.

The multi-disciplinary approach, the accompaniment, the targeted treatment of symptoms according to the identified causes, the assessment and treatment in epiphenomena (pain, depression, and fatigue) could eventually lead to increased adherence to treatment and to the significant improvement of the quality of life in people living with HIV/AIDS.

The results of this study may be applied to other chronic or degenerative diseases such as multiple sclerosis, chronic hepatitis, rheumatic diseases, whose length of survival has become longer and whose treatment has been difficult to tolerate. Palliative medicine aims are to ensure the best possible quality of life and to preserve the dignity of the patient.

Dame Cicely Saunders pointed out some doctors are still reluctant to accept palliative care, unless it is an oncological disease, although it should be inserted in all medical specialties.
The infection with HIV/AIDS is still a fatal disease, including suffering, loss of autonomy, depression and pain.

Key words: quality of life, palliative care, pain, fatigue, depression

Conflicts of interest: none
Received: 17 February 2013
Accepted: 28 May 2013