Palliative Care

The Patient's Right to Know

By Nani Ma Trustee Shradha Cancer Care Trust Spiritual Advisor Ganga Prem Hospice

The prognosis, the family and the patient
Despite the fact that it is the cancer patient who has the disease, the cancer patient who suffers and the cancer patient who undergoes the trials of surgery, chemotherapy and radiotherapy, when the cancer is no longer treatable, in some countries, including India, the prognosis is told to the family and not to the patient. The family then decides whether or not the patient should be told that his life expectancy is short and, more often than not, they decide, through affection and fear, that he should not be told and further request the oncologist not to disclose the facts to him or her.

Then begins a time of pain, turmoil and confusion for the patient as his body becomes weaker and he moves towards the death transition. The family and sometimes the doctors have entered into a well meaning but perhaps misguided agreement which is aimed at keeping up the patient's will to live and avoiding the pre-death depression to which they feel he might otherwise be subject. In fact the patient finds himself very much alone as he faces the deterioration of his physical body and the guilt feelings that arise when, despite his loved ones exhortations to get better, he knows very well that he is going downhill. He tries vainly to hide his weakness and pain in order to fulfill the apparent positive expectations of his family and friends.

The isolation of unshared experience
The period before the death transition could be a special time for the terminally ill patient when he has an opportunity to resolve the social, emotional and spiritual issues of his life and prepare himself for what comes next. It is a time when he very much needs the loving support and co-operation of his near and dear ones to find his way comfortably towards the inevitable end. It is said that human beings can face the most terrible of situations when they can share their feelings, but the isolation of unshared experience is the most difficult emotion that anyone ever has to face.

The patient and his worries, desires and regrets
As the disease progresses, many patients feel very distressed about how their dependents and close relatives will manage without them. They fight desperately to cling to life in order to not fail them. How much more comfortable it would be for them if their families faced the problems and fears alongside them and were able to reassure them by helping to find practical solutions to the impending difficulties. The most challenging problems become easier to manage when they are shared but with his loved ones skirting around the truth, the patient feels lonely and isolated and is afraid to broach the subject of his worries and fears with a family who on the surface does not seem to even be aware of what is happening to him.

Many patients have unfulfilled desires which have accumulated over the years and towards the end of life these desires crowd in upon the patient's mind as he lies confined to bed or the limits of his home. Sometimes the desires may be simple and easily fulfilled, sometimes he may want to meet with someone or visit some place nearby but, as he is being told by everyone that he will get better soon, he is hesitant to voice his longing and his feelings of urgency. If he does mention his wishes, he may be quickly reassured by his carers that he can do it when he is better and again he is left with the inner doubt as to whether he will actually ever be better and able to fulfill that desire. If the facts of his life expectancy were open between him and his family, it might well be possible that he could voice his yearnings and that his family and friends could arrange for some of them to be satisfied. Some desires may not be able to be fulfilled but to be able to discuss them openly with the family would be a tremendous help in assuaging the disappointments.

In the same way, when a terminally ill cancer patient finds his activities limited and his physical reach restricted, his mind may begin to dwell on guilt feelings over past deeds, resentment and anger. If he knew for certain that his life expectancy might be limited, he would almost surely want to try to resolve some of these issues. When a patient is severely limited by his physical weakness, this is a time when his loved ones can provide the practical means to help resolve his emotional problems. Even in cases where the problem cannot be resolved, a sympathetic and loving ear goes a long way in easing a troubled mind.

The patient and his spiritual life
Last but not least are the issues surrounding the patient's spiritual life. Whilst this is entirely personal, the process of sharing feelings and practical support may play an important role in the patient's facing the death transition in a peaceful manner. The death transition involves leaving behind the physical body with all its connections and relationships. Many patients who clearly know that there is a possibility that they may leave the body soon like to strengthen their ties with a Higher Power. Such ties, whether new or old, give the patient a sense of support and refuge which they feel can help them cross over the boundary of death.

Patients who have already firm beliefs in any particular religion may want to carry out practices that they feel will help them after death and in their continued spiritual journey. Others may not be following any particular spiritual path but the knowledge of their impending demise may awaken an interest in esoteric matters which explore life after death. Almost all people look forward to the future and want to know what is coming next. True holistic support will give the patient the opportunity to look into and follow his spiritual interests at this time, so that he does not regret his lack of a Higher Refuge when the moment comes to leave this life behind.

The negative results of secrecy
It is a paradox that, in a country like India, where the family support system is so strong, all round support is denied to the dying patient by the very people who most want to help him. The secrecy surrounding the terminal condition of the patient's illness actually reduces the possibility of fully nourishing holistic care, to a bare minimum of physical and medical support, leaving vast areas of mental, emotional and spiritual problems unattended.

Palliative care professionals who might have otherwise been able to add their expertise to the family support system find themselves severely compromised as they are inevitably drawn into the shortsighted collusion. The patient is again left unaided in the areas where he most needs help. Whilst superficially the reasons for this anomaly are to protect the patient from fear and depression and to encourage the will to live, it is often our own fear of death and change which we are not prepared to face. Instead of confronting the difficulty along with our loved one we recede into evasion of the issue and leave the patient to work his own way through his inner world of fear and uncertainty.

Perhaps the prevailing cultural system of hiding the prognosis from a patient needs to be re-examined by health care professionals as well as by social workers, who are both involved in advising families on how to proceed after prognosis. It is hoped that as the principles of palliative care and a holistic approach to supportive nursing are better understood, terminally ill patients can receive more meaningful support from all involved.

Home Care and Hospice: Assisting Cancer Patients

By Dr AK Dewan Medical Director, Rajiv Gandhi Cancer Institute & Research Centre, Delhi Chairman Shradha Cancer Care Trust Medical Director Ganga Prem Hospice

Dr Dewan, Medical Director, Ganga Prem Hospice

As a surgical oncologist, I come across several cancer patients every day who are beyond the stage of cure as far as their cancer is concerned, and need palliative and home care instead. For these patients, the ideal and the best possible situation is that they are cared for with love and affection at home, and given expert medical care to keep their pain symptoms well under control.

As a cancer patient's disease progresses and when curative treatment is no longer possible, it is advisable to keep the patient in maximum comfort, to maintain his quality of life as much as possible and to make him feel emotionally secure. All this is possible if there is home care for cancer patients. Home care not only makes the patients feel at ease, it also lessens the burden on our already stretched health care system. If cancer patients can be given good medical care at home, it will save the patients the distress of waiting for their turn in already over-flowing hospitals, and will also save the hospitals the extra burden, not to mention helping the economy by reducing the costs of providing emergency care in hospitals.

In India, the concept of home care is still not very well known. In some states like Kerala, palliative care and home care gets the due recognition the service needs, but in other states, especially North India, cancer patients are left to trudge hundreds of kilometers just to get some basic medical attention in hospitals or to have access to analgesics and opioids. There are non-profit organizations as well as hospitals which are providing home care service to cancer patients. A team of trained palliative care workers and doctors visit patients in their homes, assessing the medical situation of the patient, monitoring his medication, and advising the family members and care givers about tube feeding, nutrition, hydration, etc in terminal care. With some teams, volunteers also go on home visits. What one needs for providing home care is proper palliative care training, coupled with a very sensitive approach to the patient and his family's situation.

I have seen that providing home care to terminally ill cancer patients sometimes becomes very difficult. The patient is dying and is in agonizing pain. He becomes dependent on his family for even the most basic of care like feeding and maintaining of hygiene. The family is under emotional and financial stress due to the long drawn out nature of the disease and treatment. The tension and the emotional stress cause the patient and the family to become irritated towards each other. In such situations, the home care team has to act as a bridge between the patient and the family. Sometimes, the home care team might even be unwelcome guests as the patient's family tries to deal with the patient's disease and condition in their own way.

It is hard even for terminally ill patients and their families to admit that now nothing more can be done. The family still continues to pursue treatment. The home care team has the task of gently explaining the situation to the patient and the family.

Home care for cancer patients is best coupled with hospice care. In the Indian familial settings terminally ill cancer patients generally like to stay at home with their families, but in cases when the family is destitute or living in strained conditions, or when the medical condition worsens, it always helps to move the patient to a hospice where he or she can get expert palliative care and medical attention. Therefore home care and hospice care bring the best results when used together, and both services complement each other. This is especially so because when the patient's condition worsens and medical attention is required round the clock, hospitals generally give preference to admitting patients who can be cured rather than those who are terminal. At this time the services of a hospice are invaluable.

Quality of Life Issues in Palliative Care

By Dr Ashish Goel M.S., D.N.B. (Surgical Oncology) Consultant Surgical Oncologist Rajiv Gandhi Cancer Institute, Delhi Visiting Oncologist Ganga Prem Hospice

Dr Ashish Goel at the Rishikesh clinic

Palliative Care
Although many developments have occurred in the prevention and treatment of cancer, death from this disease is still very common. Palliative care is defined as the active total care of patients whose disease is not responsive to other curative treatment. It encompasses all treatment modalities and is aimed at enhancing quality of life rather than curing disease.

Traditionally palliative care was begun as the last choice once active treatment became ineffective in prolonging survival. The modern view does not make this strict conceptual distinction between active and palliative treatment. Rather the goal should be both, life-prolonging and comforting at the same time.

Care of the Terminally Ill Cancer Patient
When a loved one is diagnosed with a terminal illness, many emotions pour out from the patient and their family. After they pass through stages of bereavement, they eventually accept the illness and are faced with the difficult decision of holding onto hope for a cure and continuing aggressive treatment versus palliative care. Maintaining a holistic view of patients with cancer and helping them to achieve the best possible quality of life is critical. Palliative chemotherapy, radiation, surgery and interventional pain management can alleviate cancer-related physical symptoms; however, health-care providers must not forget the patient’s dignity, self-worth and personal goals. After multiple hospitalizations, patients often become debilitated. As they desire to remain independent in maintaining their self-care and mobility, they may become concerned about becoming a burden to their family. For dying patients, it is most important to improve quality of life and relieve suffering.

The Three Leading Fears of Dying Patients
• Dying in Pain
• Dying Alone
• Dying in an Institution

Goals of Therapy for the Terminally Ill
• Advance Care Planning (Living Will, Durable Power of Attorney for Health Care)
• DNR orders
• Pain and Symptom Management
• Death pronouncement
• Notification of Family (breaking bad news)
• Death Certificates (cause of death, etc.-- NOT cardiac arrest for most patients)
• Autopsy requests

Quality of Life Issues in Palliative Care
Traditional outcome parameters such as survival, complication rates, recurrence rate, etc. have long been in use in conventional medicine. Such outcomes are valid only if survival is the main therapeutic goal. However by definition, survival is not the primary goal in palliative care. How can one therefore assess if the goal of palliation was achieved and that the patient was benefiting from it? The only people who can answer this question are the patients themselves. Each patient’s definition of quality of life is unique. As such, it is therefore important to treat each person as an individual and to continue to view the patient holistically. Controlling cancer-related symptoms can ameliorate the patient’s limited remaining time with family and friends.

Measurement of Quality of Life
Several questionnaires have been constructed that allow patients to express their subjective perception and evaluation. Assessment of Quality of Life by definition means a measurement of overall patient well being and functional capacities in the somatic, psychological and social domains in the patient’s perspective and not merely the absence of disease or illness. Now what determines whether a patient has a good or bad quality of life? Is it the degree of illness, the course of the disease, the treatment, the family, or the type of supportive care? Psychosocial concepts such as negative affect, experienced social stigma, social desirability, positive thinking, or therapy-related expectations are equally important correlates of a patient’s well-being.

There are certain problems in the palliative/terminal situation that are not covered in the standard QOL questionnaires described. These include spiritual and existential problems, the care situation, family support/social isolation and specific somatic symptoms. Furthermore, most standard questionnaires are too long for those palliative patients who are terminally ill. To date, most publications have used the STAS (Support Team Assessment Schedule) and the MQOL (McGill Quality of Life questionnaire). Secondly international translation procedures and validation studies have not been performed for a palliative-specific instrument. A short form of the EORTC QLQ-C30 for palliative settings and specific scales addressing spiritual and existential dimensions is under development.

Although several instruments have been developed to measure the quality of life (QOL) of palliative care patients, a rigorous research study has not specifically asked patients themselves what is important to their QOL. It is, therefore, not clear whether these instruments measure what is most important to these patients' QOL. Five broad domains were found to be important determinants of patient QOL: (1) the patient's own state, including physical and cognitive functioning, psychological state and physical condition; (2) quality of palliative care; (3) physical environment; (4) relationships; and (5) outlook.

The relief of pain at the end of life is the most important issue. Physicians need to acknowledge and communicate to these patients about treatment options available which could improve their quality of life. Providing them with education about their illness and the different palliative care choices can make the patients and families feel empowered to make the best decision.

In summary, the palliative situation poses specific problems for QOL assessment and research. Partially these challenges have been met, particularly in the development of short, easy-to-handle questionnaires. Measurement approaches beyond questionnaires would be an additional option that merits more attention in future. However, it should be noted that a QOL profile is no substitute for a patient–physician interaction.

Patient–physician interaction remains the cornerstone of medicine, particularly in palliative care.