Palliative care

Home care and hospice: assisting cancer patients

By Dr AK Dewan Medical Director, Rajiv Gandhi Cancer Institute & Research Centre, Delhi 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.