General aspects
“Palliative care is an approach that seeks to improve the quality of life of patients diagnosed with life-threatening illnesses through prevention and relief of suffering”(1). Whether people suffer from cancer, infectious diseases, progressive organ failure or the effects of a severe disability, the needs are similar, and the physical, emotional, social and spiritual suffering can be enormous. Worldwide, the development of palliative care services has been variable. In North America, Western Europe and Australia, there is almost a complete coverage, while in many of the developing parts of the world the provision of palliative care is uneven or nonexistent. The World Health Organization (WHO) has recognized the issue and, together with an innovative resolution at the World Health Assembly in 2014 and UNGASS in 2016, there is a significant international consensus on the need for palliative care.
Palliative care has also been assimilated as a fundamental human right. These imperatives need to be implemented in order to address the need to include palliative care in countries’ development programs and regional policies. Integration presupposes the existence of palliative care in health systems supported by good education, access to medicines and basic equipment(2). The United Nations Committee on Economic, Social and Cultural Rights asserted that the “states are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons... to preventive, curative and palliative health services”(3).
Palliative care, hospice care
Palliative care remains an incomprehensible option for patients, but for those who are not in the so-called “end of life” period. Palliative care is a specialized medical care focused on ensuring the relief of the symptoms and stress of a serious illness. What is the difference between palliative care and hospice care? There is a confusion between palliative care and hospice care; they are not the same. Think of them this way: all hospice care is also palliative care, but not all palliative care is hospice care. Palliative care often begins at the time of diagnosis and occurs at the same time as treatment. Hospice care begins when the treatment is no longer focused on curative treatment, but instead on comfort as the disease progresses. Both palliative care and hospice care relieve the physical symptoms. The purpose of both hospice and palliative care is to help improve a patient’s quality of life. Other difference is that the hospice is for the weeks and months of the end of life, and palliative care provides relief from the pain and stress of the patients with a serious health problem. A palliative care team has an emotional, spiritual, social approach etc., meaning a holistic approach. It follows what is significant for a patient and his family. Care goals are set at the beginning of the disease. A palliative care team cannot exist without funding for social workers, chaplains and primary care physicians who have these conversations with patients. To update the discussion about palliative care, we must remember the situation that existed during the COVID-19 pandemic which suddenly made a number of people wake up to the situation of needing palliative care or hospice care. It has been found in the UK, for example, that, during the pandemic, home care has become an increasing option in 2020, with a trend that continues in 2021. Comparing with Romania, we find that palliative home care is often lacking(4).
An important benefit of palliative care is the reduction of unwanted hospitalization. Multiple studies have shown that palliative care decreases the need for hospitalization, including readmissions, and those in need of hospitalization have shorter stays when palliative care is part of healthcare. The problem is that in Romania there are still few palliative care units, and regarding the cooperation between doctors in the hospital who send patients for palliative care to specialized places or for teams that go home and the staff that does this care, there is no feedback. This is due both to the doctors who treated the patients at the beginning of the disease, because they no longer consider that they should be interested in them, and to the staff of the hospice or to the one who does treatments at home. For the latter (hospice and home care), the reason is that they are not – surprisingly – aware of the need for dialogue with the specialist in medical oncology. I mentioned that it is “surprising” for those who provide palliative care the fact that they do not communicate with medical oncologists because in palliation the network is one of the main components(5).
Why is palliative care neglected?
Often, the discussion about palliative care does not happen between a primary care professional and a patient, because it is not made known. Oncologists do not have time for longer conversations, unrelated to the urgent medical problem that led to the visit. Although today medical oncologists who have expertise in oncology have more palliative care teams in hospitals than ever before, many of them do not have dedicated staff. Instead, they are doctors and nurses who have a long list of responsibilities. Some organizations have access to a chaplain and social worker, others do not. National organizations provide grants and funding for palliative care programs. Education about palliative care options should take place before you or someone in your family faces a medical crisis. The best way to continue to increase palliative care is to learn more about it and talk about it with your loved ones.
Unfortunately, those who have experience in palliative care and in organizing this care activity are not taken into account by decision makers who usually believe they have the absolute truth(6).
Hospice activity in 2020
It appears that this activity has declined in a large part due to the COVID-19 pandemic. In some hospices, there have been outbreaks of SARS-CoV-2 infections. Unfortunately, our information is not from Romania, but from the United States of America. Despite this health and economic situation, hospices have adapted, improvised and overcome many of the obstacles imposed on them in 2020. Of course, the pandemic is not over, but hospices apply the lessons learned from the early days of the crisis to consolidate for the next phases, if these phases or “waves” will be repeated.
Some general principles to consider:
1. The use of alternative methods to perform the visit to patients (phone call, video phone or other device with audio and video capability), especially for routine visits.
2. Minimize the number of different employees who are assigned to a salon.
a) The personnel entry into several buildings must be minimized, because the staff movement between buildings is suspected of spreading the SARS-CoV-2 infection.
b) If cases of COVID-19 are found in a building, hospice staff should restricted the moving to other buildings.
3. The staff must combine patients’ visits in order to avoid entering and leaving the same building several times.
4. Increase the number and types of care and services provided by a single hospice staff member to minimize the number of people who need to enter a room.
Telemedicine developed
in the COVID-19 era
Telemedicine developed during the pandemic. It is growing, but it is premature to explain the total impact that the pandemic will have on healthcare in general and palliative care in particular, but we can be sure that telemedicine will continue to grow. This will be a cornerstone of the future health care policy following the COVID-19 pandemic. Although in Romania computerization is underdeveloped, there have been telemedicine companies that have quite a lot of followers. We do not know the real situation regarding the number of telemedicine companies, solved cases, cases of malpractice etc. There is no clear legislation for telemedicine either legally. The problems from the ethical point of view and regarding the doctor’s responsibilities are in our opinion unresolved(7,8).
New players entering the hospice space
In the world, but also in Romania, it is found that private companies in the medical field develop palliative care and hospice activities (for example, “Sf. Sava” Hospital, Hospice “Casa Speranţei” etc.). In the world in general, especially in Western countries, private equity companies have invested heavily in hospices in recent years, a trend that is expected to continue to grow. Investment funds and family businesses seek to capitalize on the growing demand and demographic forecasts that show that the population is aging. An investment fund is the tool by which investors financially support an entrepreneur’s efforts to locate, acquire, manage and develop a private company, according to the Stanford Graduate School of Business. An estimated 198 “seeking” investment funds currently operate in the United States, according to the Stanford University. While the wider healthcare market has experienced more disruption, hospice activity has continued rapidly, according to a report by Provident Healthcare Partners(9).
PALLIATIVE CARE IS NOT USED ACCORDING TO EXISTING CARE NEEDS. A decade ago, a published study clearly showed that palliative care combined with antitumor treatment for advanced lung cancer significantly improved the patients’ quality of life, reduced the symptoms of depression, reduced the hospitalizations from a complication of their disease, and even improved survival. Subsequent research has found similar beneficial effects in other cancers. USA researchers say that nowadays two-thirds of patients living with a serious illness who could benefit from this therapy do not receive it, and most oncologists do not prescribe it, despite the approvals from the American Cancer Society and the American Cancer Society of Clinical Oncology (ASCO). The same thing happens in Romania, from our observations.
Palliative therapy does not mean the use of drugs or procedures in particular, although they also have their role. Palliative therapy implies a team of specialist doctors, nurses, social workers and priests who focus on improving the quality of life and on reducing the burden of disease for seriously ill people and their families. This is different from hospice – the care of the dying, which focuses on comfort. Palliative care is offered along with other treatments to people of any age who suffer from serious illnesses. Once hired, a palliative care team can treat pain and other symptoms that lead to suffering, respond to family needs, coordinate care, and provide emotional and spiritual support(10).
NEW FIELDS OF ACTIVITY IN PALLIATIVE CARE (Sophia Antipolis, June 18, 2021) reveals the benefits that the practice of Tai Chi can have. Tai Chi – short for T’ai chi ch’üan or Tàijí quán, sometimes colloquially known as “shadowboxing” – is a practical Chinese martial art for defense, health benefits and meditation. A small feasibility study suggested that Tai Chi has the potential to reduce depression, anxiety and stress, as well as to improve sleep in people who have suffered a stroke. The research was presented at the EuroHeartCare – ACNAP 2021 Congress, an online scientific congress of the European Society of Cardiology (ESC). This is a palliative prevention procedure in cardiovascular diseases which demonstrates the importance of palliation in this medical field, cardiology(11).
Neuropalliative care
In the US, there are university departments of palliative neurological care. An example is the neuropalliative care division of the University of Rochester Medical Center, which moved in 2020 after the nation’s first neuropalliative care department was established in a neurology department at the University of Colorado School of Medicine, in 2016. This diversification of education university allows the deepening of new areas imposed by the enormous medical knowledge and a pathology and need for care for those patients who survive a stroke or heart attack or have a long survival with advanced cancer that is well controlled with the new medication.
Today, especially among medical students, neurology residents and people who are at the beginning of their careers, but even later in their practice, there is an interest that fueled the establishment of the International Neuropalliative Care Society (INPCS), which will begin accepting members this spring. The company is making plans for its first annual meeting. Only a tiny fraction of neurologists are trained in palliative care, few palliative care physicians are trained in neurology, and few occupational therapists and other allied health professionals have expertise in neurodegenerative illnesses, said Ed Richfield (MBChB, PhD), a geriatrician from Bristol, England, who is specialized in movement disorders.
“It’s only by bringing all those people together that you can have a quorum of knowledge from which you can really grow,” said Dr. Richfield, chair of the INPCS clinical committee. “That’s a real strength for this society”, he added(12).
New symptomatic treatments
For medical oncologists, to whom this brief review of palliative care is addressed, the treatment of the main symptoms of oncological disease is the most common palliative approach they take. That is why at the end of the review he introduces some new aspects regarding the symptomatic treatment(13). Thus, Givens and Savarese describe the treatment of cough in bronchopulmonary cancer with aprepitant. Cough can be an annoying and difficult symptom to treat in patients with lung cancer. Aprepitant – which is used for chemotherapy-related nausea and vomiting – can relieve cough by inhibiting the activation of neurokinin 1 (NK-1) receptors in substance P. In a randomized cross-sectional study of 20 patients with lung cancer and cough, aprepitant reduced the frequency of cough during waking time by 22% and during sleep by 60% compared to placebo. This study supports the participation of NK-1 receptors as a mechanism in chronic cough. Additional research is needed, with a larger study population, a longer duration and an optimized dosage. The aforementioned authors also discuss the new palliative approach to dyspnea. The new guideline of the American Society of Clinical Oncology (ASCO) on palliative care for dyspnea in patients with advanced cancer supports the use of systemic opioids when nonpharmacological measures and the treatment of the underlying disease (where possible) have not provided sufficient improvement. As with other guidelines, caution is advised regarding respiratory depression. In addition, the use of additional oxygen to relieve dyspnea is suggested for patients with hypoxemia, if it is in accordance with the goals of care. To help resolve dyspnea, the ASCO guide first recommends trying the available nonpharmacological interventions, including the following: airflow interventions, such as directing a portable or table ventilator to the cheek; standard supplemental oxygen for patients with hypoxemia who have dyspnea. Additional oxygen is not recommended if SpO2 (oxygen saturation) is higher than 90%. A time-limited therapeutic study of nasal cannula oxygen therapy showed that a large flow can be provided if the patients have significant dyspnea and hypoxemia, despite standard supplemental oxygen. A time-limited therapeutic procedure consisting of noninvasive ventilation may be offered to patients with dyspnea, despite the use of standard measures. Other interventions may be offered, such as breathing techniques, posture, relaxation, distraction, meditation or acupressure/reflexology. For patients with chronic cancer-related pain who are receiving long-acting opioids, the breakthrough pain can be treated with one of the latest formulations of fast-release, transmucosal immediate-release fentanyl (TIRF), which are listed specifically for cancer patients who tolerate opioids. In the United States, all of these products, including generic drugs, have a common risk assessment strategy and mandatory mitigation, the purpose of which is to reduce the risk of misuse and unintentional overdose. Due to data suggesting that TIRF preparations are still prescribed to patients who have not received opioids, additional regulations have been established by the US Food and Drug Administration, which require the verification and documentation of opioid tolerance by both the prescribing physician and the pharmacy, before each individual TIRF prescription(15).
Conclusions
Palliative care includes an important area of death-causing diseases and more. Referring in particular to palliative care in cancer, which is one of the most important areas in which palliative care is essential and mandatory for proper treatment, we must mention that, due to innovative treatments, the survival time, even of patients with advanced stages of cancer, has increased significantly, and palliative care is essential for these survivors.
Another important element that is revealed in palliative care today is that end-of-life care is performed in hospices and this type of care requires a special specialization of those who practice it.
Palliative care has a dynamic and permanent development, specialties like cardiology and neurology having developed training curricula in these areas in palliative care. New medical companies with a palliative profile have developed recently. Also, medical research in the field of palliation leads to a better understanding of the causes of clinical symptoms and to the emergence of new drugs for symptomatic, palliative treatment.
Conflict of interests: The author declares no conflict of interests.