Tessa Quinn
There has been a cultural shift in the way people view death and dying, with more people choosing to die at home than in hospitals. This has put pressure on hospitals to discharge patients as soon as possible, which has led to concerns about patients being discharged too soon and sent home in pain. During the COVID-19 pandemic, hospitals in some areas sent patients infected with the virus back to their families to die at home, in some cases discontinuing treatment. This has raised ethical questions about the role of hospitals and hospice care in managing pain and providing end-of-life care. While hospitals aim to effectively manage pain to promote faster recovery and improve quality of life, patients with chronic pain may face challenges in convincing ER staff that their complaints are legitimate. As a result, patients may be labelled as drug-seeking or face negative perceptions if they advocate for themselves. To avoid being discharged too soon, patients should ensure they have a good grasp on their new medications, understand how to manage their health condition, and know the symptoms to watch for after leaving the hospital.
| Characteristics | Values |
|---|---|
| Hospitals sending patients home in pain | Rare, but possible |
| Reasons | Financial incentives, patient preference, insurance reimbursement, overwhelmed healthcare system, patient behavior, drug-seeking patients |
| Solutions | Relaxation techniques, hot or cold therapy, massage, pain medication, PCA pump, epidural |
| Advice for patients | Establish a relationship with a regular physician, contact them before going to the ER, carry a letter from your physician with diagnosis and treatment details, be aware of key symptoms post-discharge |
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What You'll Learn
Hospitals under pressure to discharge patients
Hospitals are under increasing pressure to discharge patients, especially during the pandemic. This has resulted in patients being sent home to die, often with insufficient hospice care or pain management. While dying at home may be preferable to some, the reality is that many patients require professional healthcare support, particularly when facing the unexpected ramifications of illness.
During the pandemic, hospitals in Seattle, Chicago, and New York City discharged patients, citing concerns about the threat of infection to vulnerable caregivers and the difficulty of navigating harrowing deaths alone. This placed immense pressure on families, who felt unequipped to manage their loved ones' pain and complex symptoms without adequate support.
In normal circumstances, hospice workers provide frequent face-to-face visits, especially during a patient's final days. However, limited in-person visits during the pandemic left families struggling to care for their dying loved ones without the necessary expertise and support. This situation was further exacerbated by the lack of hospice beds and the need to prioritize bed space for other patients.
Additionally, there is a fine line between providing adequate pain management and the potential for drug-seeking behavior. ER staff must balance patient needs with the risk of addiction or drug-seeking behavior, which can sometimes lead to legitimate patients being labeled as drug-seekers. As a result, patients with chronic pain may face skepticism from medical professionals, adding to the complexity of managing pain and providing adequate care.
To address these challenges, hospitals should focus on providing comprehensive pain management plans, including medication, relaxation techniques, and patient education. Additionally, improving access to palliative care and inpatient hospice services can offer a more suitable alternative to acute hospitals, providing cost-effective and beneficial care for dying patients.
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Patients' preference to die at home
It is understandable that patients may want to be discharged from the hospital and return to the comfort of their homes, especially when they are terminally ill. While some patients may prefer to be treated in a hospital or facility until their last breath, many want to be surrounded by family and friends in a familiar environment.
In the Western world, the wish to be cared for and to die at home is common among people with end-stage cancer. This preference seems stable over time and does not change with deterioration in health status or progression in illness. Patients want to "be in the present", "be safe and in charge", and "be seen and acknowledged". They want to live a meaningful life until death and be the same person as always. These preferences are often met at home, where they can have autonomy over choices such as what to eat and when to sleep.
During the pandemic, however, the trend of dying at home flipped, with most COVID-19 deaths occurring in the hospital due to the "acuity of the illness, the rapid decline, and the severity of the illness". Hospitals in Seattle, Chicago, and New York City did not send patients home for hospice care, partly because of the threat of infection to vulnerable caregivers.
Despite the growing preference to die at home, some health systems are struggling to fulfill this wish, especially for patients with complex health conditions, financial constraints, or limited at-home support. The burden of caregiving can be crushing for family members, who may be wholly unprepared and untrained for the task. For instance, they may not know how to manage distressing symptoms such as pain, agitation, and dyspnea, or provide intimate personal care such as bathing and toileting assistance. As a result, patients' preferences for home death can change rapidly as death nears and the realities of dying at home sink in.
Pain management for patients at home
Pain is easier to prevent than to relieve, and severe pain is hard to manage. Palliative medical specialists are experienced in pain management for seriously ill patients. Morphine, a strong opiate, can be used to treat serious pain and ease the feeling of shortness of breath. However, side effects may include confusion, drowsiness, or hallucinations.
Under Medicare, hospice patients can go to the hospital if they have "uncontrolled pain that cannot be managed at home". It is important to treat emotional pain and suffering as well. Medicine may help if the depression or anxiety is severe.
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Hospice care during the pandemic
Hospice care is a type of palliative care that focuses on providing comfort and support to patients and their families during the end-of-life stage. The Covid-19 pandemic presented unprecedented challenges to hospice care, and many hospices had to adapt rapidly to continue delivering their vital services.
Research from the University of Sheffield and the University of Warwick revealed that hospice care across the West Midlands fell below the "gold standard" during the pandemic, despite the tireless efforts of frontline healthcare professionals. The pandemic disrupted the personalised, holistic care typically provided to patients and their families. This disruption was attributed to various factors, including frequently updated guidelines, the challenges of providing patient care while wearing personal protective equipment (PPE), and the suspension of volunteers in patient-facing roles.
The pandemic also impacted the way hospice care was delivered. To protect patients and staff from the risk of infection, hospice companies limited in-person visits. This meant that many families had to spend the final days of their loved ones alone, which was extremely challenging and distressing. Local hospices responded by deploying their staff into patients' homes and care homes and leveraging technology to maintain contact with those they supported.
The pandemic also took a significant toll on hospice staff. They experienced exhaustion and burnout, and some required specialist bereavement and mental health support. The situation was particularly difficult in the West Midlands, with its ethnically diverse population and high levels of deprivation.
Despite the challenges, hospice care providers demonstrated resilience and dedication in their efforts to support patients and their families. They explored new ways to provide end-of-life care while navigating the complexities of the pandemic. The lessons learned during this difficult period have the potential to shape national end-of-life care policies and improve the quality of hospice care in the future.
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Managing pain in hospitals
Firstly, patients should feel empowered to communicate their pain levels to their healthcare team. Reporting pain is not a sign of weakness, and only the patient themselves knows the level of pain they are experiencing. To facilitate this, healthcare professionals often use a pain scale of 1 to 10, with 10 being the worst pain possible, to understand and address patients' pain effectively.
There are various pain management options available in hospitals. Medication is a common approach, with pills, shots, intravenous (IV) administration, and epidurals being some of the methods used. Additionally, hospitals may offer relaxation techniques, hot or cold therapy, and massage to alleviate pain. Hospitals may also provide educational resources and channels that offer relaxing images and music to help patients understand and manage their pain.
For patients with chronic pain, establishing a relationship with a regular physician who treats their condition is crucial. This can help legitimize their complaints when they visit the emergency room (ER) and need pain management. Patients with chronic pain should also ensure they have tried to contact their regular doctor before going to the ER, as it demonstrates that they are using the emergency room as a last resort. Having a letter from their physician detailing their diagnosis, treatment regimen, and contact information can be beneficial when seeking care at a hospital other than their usual one.
While hospitals aim to provide effective pain management, there are instances where patients may be discharged and continue their care at home or in hospice care. This can be due to various factors, including bed capacity constraints or the patient's preference for dying at home. However, it is important to note that hospitals prioritize patient comfort and safety, and they provide clinical expertise, vigilant medical staff, and prompt symptom relief.
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Patients' ability to refuse hospice care
The COVID-19 pandemic has brought to light the issue of hospitals sending patients home, in some cases discontinuing treatment and sending them home to die. While the trend of dying at home has been increasing over the years, the pandemic has seen a reversal, with most COVID-19 deaths occurring in hospitals. However, in some areas, hospitals have indeed been sending patients home, sometimes with hospice care.
Patients have the right to refuse hospice care, and this decision should be honoured and respected. It is a difficult decision, and patients may have various reasons for doing so, including the negative connotations associated with the word "hospice", or the desire to avoid difficult conversations about end-of-life care. If a patient refuses hospice care, there are still steps that can be taken to improve their quality of life. Palliative care can be considered, which can provide additional help and support for the patient and their family. It is important to assess the patient's physical abilities and determine what kind of assistance they may need to keep them safe at home. This could include help with meals, cleaning, laundry, or hiring private caregiving services to assist with medications and hygiene.
Additionally, it is crucial to have open and honest conversations about end-of-life care. While these discussions can be distressing, they allow patients and their loved ones to express their wishes and fears. Patients have the right to refuse life-prolonging treatments, such as resuscitation, artificial ventilation, dialysis, or artificial feeding, if they believe their quality of life will suffer. It is important to make these decisions in advance and inform medical professionals and family members.
In the case of patients with Medicare in the United States, it is important to note that hospice patients can go to the hospital if they have uncontrolled pain that cannot be managed at home. Patients always have the right to revoke hospice care and seek more aggressive or curative treatment options.
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Frequently asked questions
If you feel you're being discharged from the hospital too soon, you can talk to your physician, ask your insurance company to delay your discharge, or speak with the hospital's patient advocate.
Talk to your doctor or nurse so they can help you manage your pain. To help you relieve your pain, they will ask you questions and refer to a pain scale of 1 to 10. In addition to pain medication, there are several other things that can help relieve your pain, such as relaxation techniques, hot or cold therapy, and massage.
Make sure you have a regular physician who treats your chronic pain. Show that you've tried to contact your regular doctor before going to the ER. ER staff will be more sympathetic to patients who have been told to go to the emergency room by their doctors.
Before discharging you, your health care team should address any potential issues, including new medications, how to manage your health condition, symptoms to look out for, and what caregiving you'll need at home. If you're in pain, you can alert your health care provider or seek emergency treatment.
