Entrevista con ... Marcos Gómez Sancho. ¿Qué son los Cuidados Paliativos? 1 de 3

Introduction to Palliative Care

Overview of Dr. Marco's Background

• Dr. Marco is a specialist in anesthesia and a pioneer in palliative care, having established the first palliative care units in Spain in 1989.

• He has directed the palliative care unit at Doctor Negrín Hospital in Gran Canaria and received the Gold Medal for Merit at Work in 2011.

• His leadership roles include presidency of the Spanish Society of Palliative Care and involvement with medical ethics committees.

Understanding Palliative Care

• Palliative care is defined as a healthcare approach aimed at improving quality of life for patients and families when curative treatments are no longer effective.

• The focus shifts from curing illness to managing symptoms, pain control, and addressing psychological, social, and spiritual needs holistically.

Interdisciplinary Approach to Patient Care

Team Composition

• Effective palliative care requires interdisciplinary teams including doctors, nurses, psychologists, social workers, volunteers, physiotherapists, and occupational therapists.

• Collaboration among various professionals is essential to meet the diverse needs of patients facing advanced or terminal conditions.

Patient Awareness and Communication

• Patients often lack adequate information about their condition; many learn they are incurable only upon referral to palliative care services.

• This lack of communication can lead to distress; thus, it’s crucial that patients understand their situation rather than avoid discussing it.

The Transition to Palliative Care

Initial Reactions

• The term "palliative care" can evoke fear; some advocate for changing its name to reduce stigma—an idea Dr. Marco opposes as it may hinder patient awareness.

Acceptance and Environment

• Once patients accept their situation upon entering palliative care programs, they often experience a significant shift towards comfort due to supportive environments staffed by dedicated professionals.

Quality of Life in Palliative Settings

Patient Experience

• Patients report feeling welcomed and respected within palliative units where their opinions matter significantly during treatment decisions.

Humanistic Values in Medicine

• The humanistic approach prevalent in palliative care contrasts with more technocratic medical practices today; this fosters better patient satisfaction and well-being.

Community Recognition

• There is frequent public acknowledgment through media expressing gratitude towards palliative care services for their compassionate support during difficult times.

Understanding Holistic Patient Care

The Importance of Humanism in Medical Care

• Emphasizes that during the most challenging times for patients and their families, they receive the best care and attention, highlighting a shift in perspective towards holistic patient care.

• Discusses the necessity of rediscovering traditional values in medical professions that have been lost, which are beneficial for both patients and their families.

Challenges in Family Medicine

• A family doctor reflects on how excessive medicalization often overshadows the essential concept of caring for patients within their environment.

• Points out that palliative care requires minimal investment in equipment but demands more time from healthcare professionals, which is crucial for end-of-life care.

Investment in Time Over Technology

• Argues that while medications and treatments are generally inexpensive, the real investment should be in providing healthcare professionals with adequate time to listen and engage with patients.

• Suggests a paradigm shift away from reliance on technology towards prioritizing time and space as critical components of effective patient care.

Education Gaps in Medical Training

• Critiques medical education for focusing primarily on curing rather than caring, leading to inadequate training for handling palliative cases.

• Notes that only a fraction of medical schools offer mandatory courses on palliative care despite its importance, indicating a significant gap in training.

The Need for Comprehensive Palliative Care Education

• Highlights that many nursing programs also lack sufficient training in palliative care, further compounding the issue.

• Stresses that if future doctors graduate without any exposure to palliative care concepts, they will struggle to address end-of-life issues effectively.

Personal Experience Shaping Perspectives

• Shares a personal story about undergoing surgery that led to severe complications, illustrating firsthand the need for better understanding and management of pain and suffering at the end of life.

• Reflects on how inadequate training can lead physicians to avoid difficult conversations with terminally ill patients due to fear or lack of knowledge.

Addressing Educational Deficiencies

• Calls attention to serious deficiencies in health professional education regarding palliative care and urges immediate action to improve this aspect.

Pain Management and Palliative Care Journey

Personal Experience with Neuropathic Pain

• The speaker describes neuropathic pain as indescribable, likening it to a lightning strike or a knife stab, emphasizing its horror.

• After three years of suffering and hospitalization, the speaker reflects on the time spent in bed, which allowed for deep contemplation about life and profession.

Transition to Pain Management

• Due to doubts about returning to surgical work after recovery, the speaker was offered a role in pain management, which was just emerging in Spain at that time.

• The speaker accepted this new direction without hesitation and sought training in Italy under Professor Ventafridda at the National Cancer Institute.

Observations in Pain Treatment

• Upon starting his practice in pain management, the speaker noticed deficiencies; while patients' pain was alleviated, their broader issues remained unresolved.

• Patients reported various problems beyond pain relief—such as insomnia and anxiety—indicating a need for comprehensive care rather than just pain control.

Discovering Palliative Care

• In Italy, the speaker learned about palliative care—a holistic approach that addresses not only physical but also emotional and psychological needs of patients.

• After training, he renamed his unit from "pain treatment" to "palliative care," recognizing its broader scope.

Establishing Palliative Care Networks

• The speaker collaborated with Dr. Batista in Barcelona to establish the Spanish Society of Palliative Care, marking significant progress in this field.

• His personal experience with suffering led him to understand the importance of communication and connection during illness.

Reflections on Suffering and Growth

• The isolation experienced during hospitalization prompted reflections on how crises can lead to personal transformation and professional change.

• The speaker emphasizes that crises often serve as catalysts for growth; they challenge individuals to reassess values and priorities.

Insights on Crisis Response

• Not everyone emerges positively from crises; some may become resentful or aggressive while others grow stronger through adversity.

• Suffering is portrayed as inevitable yet transformative; it presents an opportunity for improvement if one chooses to respond constructively.

Current State of Palliative Care Access

• In Spain, approximately 75,000 patients suffer intensely due to inadequate access to quality palliative care services each year.

• While some patients receive specialized palliative care support through trained teams, many do not have access unless primary healthcare providers are adequately trained.

Access to Palliative Care and Euthanasia Debate

The Need for Specialized Palliative Care

• There are approximately 75,000 individuals each year who suffer intensely and die without access to specialized palliative care services. This highlights a significant gap in healthcare provision that needs urgent attention.

• The speaker questions how it is possible for so many patients with intense suffering to die annually without receiving palliative care, emphasizing the need for systemic change in healthcare accessibility.

Euthanasia and Patient Choice

• A critical argument made by proponents of euthanasia is the "right to choose." However, the speaker challenges this notion by questioning what real choice exists for those lacking access to palliative care options.

• The recently approved euthanasia law stipulates that individuals must receive accurate information about available palliative resources. The speaker expresses concern over this requirement, noting that many people may not be informed about such resources due to their unavailability.

Implications of Limited Choices

• The lack of accessible palliative care means that individuals facing severe suffering may only see euthanasia as their viable option. This raises ethical concerns regarding true patient autonomy and informed decision-making in end-of-life scenarios.