Palliative Medicine: Barriers and Developments in ...

Introduction

Palliative medicine is in its infancy in China and faces many challenges and barriers. There are a growing number of community and academic centers as well as foundations which are supporting palliative care programs.

The Reality of Carcinoma and Need for Palliative Care in China

China has an aging population (≥ 60 years). Within a 1.59 billion population, those over 60 are 12% of population [1·]. The incidence of cancer has increased considerably over the last 30 years, which is now 400/100,000 in prevalence [2··]. There are over 7 million with cancer on the China mainland. About 2.6 million patients are diagnosed with cancer each year, and more than 80% of individuals have an advanced stage at diagnosis. In China, 25% of the population will die of cancer, and over 1.8 million will die each year of cancer [3]. The need for palliative care in advanced cancer has drastically increased due to the increasing trend in cancer incidence and mortality. Ninety percent of cancer patients in the terminal phase will not have pain relief or relief from distressing symptoms because palliative care services are still lacking in most of the country. The family unit has become smaller due to policy, and the historical care giving function of the family has been reduced. Traditionally, the children cared for their parents but at present many are not able to do so. Many patients and their relatives request euthanasia. A few even commit suicide to avoid excruciating cancer pain or because of poorly controlled spiritual and emotional distress.

Status of Caring for Patients with Advanced Cancer and Life-Limiting Illnesses

Lack of Knowledge and Understanding of the Concept or Philosophy of Cancer Care

Many medical personnel lack scientific knowledge and clinical skills in cancer management and have an incomplete understanding of the concept or philosophy of end-of-life care. Often, patients opt for unnecessary treatment (ie, infusion, blood transfusions and albumen infusions, high dosages of antibiotics) in a futile attempt to prolong life. Oncologists have the attitude of treatment at all cost and select anticancer treatment over palliation, even insisting on the slogan of “Curing cancer with radiochemotherapy and never stop until the end of life.” Physicians still insist on the principle of life-saving “at all costs” for terminal patients and insist on following the Chinese traditional saying: “Doctor a dead horse as if it were still alive—never give it up for lost” [4, 5].

Excessive Anticancer Treatment in Those with Advanced Cancer

Oncologists give more anticancer therapy to the patients than the disease needs; all patients with cancer are accepted into chemotherapy, or radiotherapy, “the radio-machine becomes a cure tool for all purposes,” regardless of stage of cancer. Therefore, many patients managed by aggressive anticancer therapies die earlier than necessary or become disabled due to treatment for the rest of their lives.

High Expectations and Cost of Aggressive Medical Care

The “overaggressive treatment” demanded by relatives for “curing” cancer and the opinions of doctors that “cancer in an advanced, incurable stage can still be treated” is costly. Most relatives feel they lack humanity or disobey Chinese filial piety and will lose face if they do not ask for active cancer therapy for their dying relative. Relatives will plead with surgeons to operate on their loved ones with advanced cancer, even if the patient is dying. The surgeon will operate only to comfort the pleading relative. Medical cost for a patient with cancer from diagnosis to death is about RMB 200,000 to 300,000 Yuan (25,000 to 37,500 American dollars), and in a few, the cost is over RMB 2.0 million Yuan, according to the recent statistics.

Anticancer Therapy Has Financial Benefit

Some oncologists manage patients based on the desire of both patients and relatives; some develop treatment for personal financial benefit [6, 7]. This can involve futile examinations using CT or MRI, biochemistry investigations, or expensive chemotherapy; radiation may be regarded as a “collecting money machine”; other financial gains include “expanded” indicators for surgery. On the other hand, there are few concerned about the futility of therapy. Physicians do not depend on medical guidelines, and there is no effective scientific oversight to management.

“Life-Saving Treatment” for the Patients in the Terminal Stage of the Cancer

The patients with cancer are firstly admitted in the oncology department after the cancer is diagnosed, and then are accepted to different anticancer treatments, such as surgery, chemotherapy, radiotherapy, and maintenance therapy. All treatments for curing cancer are continued until the patient is not responding to medications and/or other therapies, and is dying at the end of life. Oncologists or physicians treating patients at the end of life insist on “The Treatment of Saving a Life” [8]. They select traditional, curative methods and interventional approaches (eg, tracheotomy, respirators, blood transfusions, and dialysis), rather than palliative care, and persistently use intracardiac injection and CPR in the dying when the cardiopulmonary system fails. All the aforementioned developments have escalated spiritual and physical pain in the terminally ill patient and in their close relatives. Some even hasten the patient’s death and increase costs of care.

Reluctance to Use Opioids and “It is Not Good to Use Opioid Medications”

The World Health Organization advocates morphine as an essential medication to relieve severe cancer pain. However, physicians, influenced by traditional concepts of analgesics, worry about opioid addiction and respiratory depression [3, 9·]. They fail to take advantage of analgesics to relieve pain in the dying patient [10, 11]. A few oncologists reluctantly use morphine but without standard methods of titration. Pethidine is considered one of the best opioids to relieve pain, chosen first and injected frequently, even though safer and more effective mu agonists such as morphine and fentanyl are available in China [12, 13, 14]. Some physicians believe opioids could “make the patients die faster” so they promote “opiophobia” in patients and prefer using radiochemotherapy as a substitution for pain management.

Palliative Care for Patients with Advanced Cancer is Ignored

Governmental policy and Chinese citizens do not regard palliative care as an important development because of Chinese cultural values regarding the end of life, financial constraints, and disincentives to develop the field. There are no designated funds from the government for palliative care, nor are there policies to support hospice and palliative care development. Citizens in society do not like to talk about hospice and consider it unlucky or a bad omen if they do discuss palliative care or hospice. Such discussions are considered an abandonment of hope and, even worse, of the patient. Patients are considered to be “waiting for death” if provided hospice and palliative care services. Organizations or units which are engaged in hospice or palliative care will refuse to use the term “hospice” or “palliative care” in their titles within departments because of the taboo or “unlucky” association. Health professionals are reluctant to engage in hospice work because they feel depressed constantly over facing death. To be successful, they need to pay more attention to spiritual self-care, rather than the rewards and feelings of achievement which occur with curative therapies. Society and the medical field have misunderstandings about palliative care and feel that patients in palliative settings are waiting to die, or that palliative organizations provide euthanasia in a disguised form.

The Need for Palliative Care is Huge

In mainland China, 9.35 million individuals died in 2009 and 2.1 million died in 2008 of cancer. A terminally ill patient needs two relatives to look after him/her, five close relatives and ten friends to support bereavement and grief [15··]. Obviously, the needs for palliative care in advanced cancer have been expanding. Twenty thousand patients receive specialty palliative care each year, accounting for about 1% of individuals who need palliative care annually in China. There are “significant imbalances” between providers and the need for services.

The Status of Palliative Care for Patients with Advanced Cancer in China

In 1988, the first institute for hospice care was established in Tianjin (northern China) [4]. The method of “cancer pain relief and palliative care” recommended by the World Health Organization was introduced by the Chinese National Health Ministry in 1992. Since 2000, certification training to prescribe opioids is available for all clinicians who care for cancer patients and is required by the Chinese government. Regulations from the National Health Ministry, dating from 2006, allows health centers in communities to register “a unit/department of hospice and palliative care” for the patients with advanced cancer and nonmalignant diseases. The document “The Guiding Principle of Clinical Application of Narcotic Analgesic Medications” from the National Health Ministry was published in 2007 and permits a physician to prescribe controlled/slow-release opioids, or transdermal fentanyl patches for 15 days per prescription time according to the requirements of the patient.

Following these developments in palliative care, many hospices and/or departments of palliative care were started in urban areas, such as Chengdu, Shanghai, Beijing, Kunming,Shantou, and Shenyang. Over the same time, 32 Ning Yang Yuan (Peace and Care Hospitals) were established as a kind of hospice, providing palliative care in community. These were established by the Li Ka Shing Foundation since 1998 [16·, 17, 18]. The Li Ka Shing Foundation focuses on a two-pronged approach: capacity empowerment through education and the building of a caring society through medical and health care–related projects. To date, there are more than 200 hospices and palliative care units and more than 10,000 health care professionals who work in the field of palliative medicine in China.

Opioid Consumption is Significantly Increased

The regulation for opioid use has been changing with the policy of government. Opioids were “limited in the quantity or supply” during the early years of new China, “planned quantities and supply” began to be the policy in the 1990s, and “supply according to needs on record” is now the policy. Opioid consumption has been increasing from 10 kg (morphine equivalents) in 1989 to 906 kg in 2008, and accounts for 2.33% of the global consumption of morphine equivalences. The consumption of morphine increased 90.6 times during the last 20 years, increasing their rank in consumption internationally from 146 in 2001 to 81 in 2007. Per capita consumption of morphine increased from 0.08 mg/year in 1989 to 0.68 mg/year in 2008, an increase of 851%.

Academic Institutes Serving Palliative Medicine in China

In addition to the Ning Yang Yuans started by the LKSF, there are two other academic institutes involved in palliative care: the Committee for Rehabilitation and Palliative Care for Cancer within the Chinese Society of Clinical Oncology and the Chinese Association for Life Care. The Committee of Rehabilitation and Palliative Care for Cancer has held six seminars centered on palliative care since 1995 [19, 20, 21]. The Chinese Association for Life Care was developed to research the “status and policy for terminal care in Chinese urban areas.” Also, Dr. Jinxiang Li has founded a WHO-designated project in palliative medicine in Sichuan University, which was initially started in 1995. The academic work of the above mentioned institutions and organizations has promoted the development of palliative care in China, independent of direct governmental involvement.

Palliative care units in teaching hospitals of universities, hospitals within provinces, municipal hospitals, and health centers in the community are divided into two categories: ward care within the hospital and home care in the community. Palliative ward services consist of 10 units that are located in Chengdu, Shanghai, Beijing, Kunming, Tianjin, and in other major cities. Palliative ward care in Shanghai and Beijing is mainly located in the community health centers, such as the health center in the Lingfeng community of Zabei district, the geriatric hospital of New Pudong district in Shanghai, Beijing Chaoyang Men’s Hospital, and Songtang Hospice in Beijing. The Department of Palliative Medicine, West China Fourth Hospital of Sichuan University represents an excellent model of a comprehensive service in which palliative ward care is connected to home care. Dr. Jinxiang Li, supported by Dr. Robert Twycross and the International Association of Hospice and Palliative Care (IAHPC), founded a suitable model of care which connected ward care with home care, didactics, and research, in accordance with the World Health Organization’s objectives for palliative care and consistent with traditional Chinese culture values and socioeconomic structures. Dr. Li has been directing a specialty team of 30 health professionals, a hospice ward of 40 beds, two palliative outpatient clinics, and home care for hospice and palliative care in Sichuan. Dr. Li started with a consultation service in 1995, which now provides care for more than 500 patients with advanced diseases in hospital and more than 600 patients with advanced cancer in home yearly. Over 90% of pain and distressing symptoms are relieved when surveyed by the service. Multiple opioids are available (normal release, control/slow-release, and parenteral morphine, oxycodone, fentanyl patches, and methadone) for use of pain relief and symptom control. Dr. Li’s ward administered 18,990 ampoules of morphine in 2010. This accounts for 2.8% of the morphine consumed in Sichuan province yearly, which has a population of 89 million individuals.

Dr. Li, with his team, has published a Chinese textbook and developed selective courses on palliative medicine which are taken by medical students attending Sichuan University [22]. He has also trained more than 20,000 medical professors in different areas of China since 2005.

The National Hospice Service Program (NHSP) founded by LKSF in 1998 is called Ning Yang Yuan, and involves predominately home palliative care in China. Mr. Li Ka Shing thinks that “the patients with cancer have made a lot of contribution to the society. The patients’ distress and pain should be relieved and their humanity should be respected. We should improve the quality of life for these patients during the last days of their life” [23·]. LKSF has donated RMB 50 million Yuan (6 million American dollars) per year and founded the 32 Ning Yang Yuans, which are located in the different areas of China. These Ning Yang Yuans provide home care services for about 15,000 patients yearly.

The objectives and principles of NHSP include [24··]:

1. 1.

   To improve the quality of life for patients and relatives;

2. 2.

   To provide “five domains of care”: whole person, whole family, whole course of illness, whole team, and whole community;

3. 3.

   To serve the patients in poverty with advanced cancer in home without regard for payment;

4. 4.

   To provide relief from pain and other distressing symptoms;

5. 5.

   To provide psychosocial, emotional, and spiritual assistance to the patients and their families;

6. 6.

   To develop education and training in palliative care for society.

Conclusions

Palliative care in China is slowly developing over the last 23 years. The momentum for development has been through foundational support, community centers, and individual academic centers led by those physicians who see palliative care as vital to the Chinese medical establishment.