Hailey Tran
While most people would prefer to die at home, about one-third of deaths in the US occur in hospitals. This may be due to a variety of reasons, including the unpredictable nature of death, overestimation of medical care, and the complex nuances of end-of-life care. However, there are steps that can be taken to increase the likelihood of a peaceful death, such as advance care planning, palliative and hospice care, and meeting the physical, mental, emotional, and spiritual needs of the dying individual.
| Characteristics | Values |
|---|---|
| Dying location | Dying at home is preferred by most people, but about one-third of deaths occur in hospitals. Dying in a care facility or nursing home is also an option. |
| End-of-life care | Palliative and hospice care teams in hospitals can assist with managing symptoms and making medical decisions. Alternative sites of care, such as hospice settings, are becoming more available and acceptable. |
| Advance care planning | It's important to plan end-of-life care in advance, including the type of care, care directives, costs, and availability of family and friends. |
| Comfort care | Physical comfort, mental and emotional needs, spiritual needs, and practical tasks are important areas of focus for people who are dying. |
| Communication | Improved communication between doctors and patients about prognosis and end-of-life wishes is essential. |
| Treatment | Aggressive and intensive medical treatments in hospitals may not always be preferred by patients, and inpatient treatment is often futile in terminal illnesses. |
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What You'll Learn
- Seek alternative sites of care, such as hospice settings
- Plan ahead and communicate your end-of-life care wishes
- Ensure you receive adequate symptom management and pain relief
- Be aware of the physical signs of approaching death and act accordingly
- Understand the emotional and mental needs of the dying person
Seek alternative sites of care, such as hospice settings
Seeking alternative sites of care, such as hospice settings, can be a viable option for those who wish to avoid dying in a hospital. Hospice is an approach to care that focuses on providing comfort, dignity, and improving the quality of life for individuals in their final weeks or months of their lives. It is important to note that hospice care is typically for those with terminal illnesses and a life expectancy of six months or less, as certified by a hospice doctor and the patient's regular doctor.
Hospice care can be provided in various settings, including at home, in a nursing home, hospital, or a separate inpatient hospice center. It brings together a team of professionals, including nurses, doctors, social workers, spiritual advisors, and trained volunteers, who work collaboratively with the dying individual, their caregiver, and family. This interdisciplinary team provides medical, emotional, and spiritual support tailored to the unique needs of each person.
One of the key advantages of hospice care is that it allows individuals to receive care in familiar surroundings, surrounded by their loved ones. This can provide a sense of comfort and peace during their final days. For example, in the case of Meena, as mentioned in the National Institute on Aging, her physician advised against moving her to a hospital, explaining that she could receive the same care in the nursing home and that a change in environment could disturb and confuse her. Ultimately, Meena passed away peacefully in familiar surroundings, with her loved ones present.
Hospice care also provides 24/7 support, with regular visits from team members and someone always available by phone. This ensures that the dying individual and their family have continuous access to the care and assistance they need. Additionally, hospice care can help manage mental and emotional distress, providing comfort and support during this challenging time. It is important to remember that choosing hospice care does not have to be a permanent decision, and individuals can return to active treatment if they wish.
Seeking alternative sites of care, such as hospice settings, offers a dignified and comforting option for those nearing the end of their lives. It prioritizes the individual's quality of life, respects their wishes, and provides holistic support to both the dying person and their loved ones. By considering hospice care, individuals can explore a personalized approach to their end-of-life journey, potentially avoiding dying in a hospital setting.
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Plan ahead and communicate your end-of-life care wishes
Planning ahead for end-of-life care can help ensure that you receive the care you want and make things easier for your family. It can be a good idea to record your views, preferences, and priorities about your future care. This is sometimes called advance care planning. It involves thinking and talking about your wishes for how you want to be cared for in the final months of your life and when you are dying.
You can document your wishes in a Recommended Summary Plan for Emergency Care and Treatment (ReSPECT). This will guide doctors and other healthcare staff in making decisions about your emergency care and treatment if you cannot participate in these decisions yourself. You can review your plan regularly and make changes as you see fit.
- Do you want uninterrupted company, or periods of rest in between?
- Do you want to be touched?
- Do you want to hear music in your hospital room?
- Who should be informed of the situation, and who should not?
- How do you wish to be cared for? At home, on a palliative care ward, or in an inpatient hospice?
Additionally, you may want to consider legal and financial matters, such as making a will or planning for the care of anyone who relies on you. It is also important to choose representatives who can speak for you and ensure that your wishes are respected.
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Ensure you receive adequate symptom management and pain relief
When hospitalised, it is important to ensure that you receive adequate symptom management and pain relief. This is especially crucial for end-of-life care, where physical comfort, mental and emotional needs, spiritual needs, and practical tasks are all essential aspects of providing a peaceful death.
Pain assessment tools are typically evidence-based and include evaluations of pain intensity, location, quality, and associated symptoms. An accurate pain screening is the foundation for developing an effective, individualised pain management plan. For example, a pain screening may determine whether a patient is in pain, and if so, a comprehensive pain assessment is conducted. Organisations are responsible for ensuring that appropriate screening tools are available and used correctly, taking into account the patient's age, condition, and ability to understand.
Additionally, it is crucial to have non-pharmacological pain treatment options available for patients who refuse opioids or for whom physicians believe complementary therapies may be beneficial. These non-pharmacological strategies include acupuncture, massage therapy, physical therapy, relaxation techniques, music therapy, and cognitive behavioural therapy. The level of evidence for these therapies varies and is constantly evolving, so organisations have the flexibility to choose the modalities they offer. However, patient preferences for pain management should always be considered, and patients should be educated on accessing their preferred treatment post-discharge if it cannot be provided during their hospital stay.
To ensure that patients receive adequate symptom management and pain relief, hospitals should provide their staff and licensed practitioners (LPs) with information on available services for complex pain management. This includes both internal and external resources, such as qualified providers with specific expertise, outpatient pain management programs, or community resources. Compliance with this requirement can be determined through interviews with staff, LPs, and patients.
By advocating for yourself or your loved ones in the hospital, you can ensure that pain is properly assessed and managed, and that non-pharmacological options are considered if necessary. This can help improve the quality of life during a hospital stay and ensure that physical and mental comfort is prioritised.
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Be aware of the physical signs of approaching death and act accordingly
As a person approaches death, they will become less active and their body will need less energy. They may stop eating or drinking as their appetite gradually reduces. They may also experience a decrease in urination and bowel movements. It is important to keep their lips moistened with lip balm to prevent discomfort.
In the hours or days leading up to death, a person's muscles may become weak, and they may be unable to carry out small tasks. They may also start to withdraw from interpersonal situations and become confused or incoherent. It is not unusual for a dying person to experience hallucinations or distorted visions. Calm, confident tones can reduce the risk of startling the patient, and it is important to keep talking to them and introduce each visitor. Hearing is often the last sense a person loses, so continuing to speak calmly and quietly can provide reassurance.
In addition to physical changes, a dying person may experience mental and emotional distress. They may feel depressed or anxious, and it is important to provide comfort and support. They may want to talk about their memories or big events in their life, or they may prefer to just be around their loved ones. It is important to allow the person to be in control and follow their lead.
Breathing patterns may also change as death approaches, with alternating periods of loud rasping breaths and quiet breathing. Towards the end, a dying person may only breathe periodically, with an intake of breath followed by several seconds without breath. This can be upsetting to witness, as the person may seem to stop breathing only to start again. Morphine can be given to ease the feeling of shortness of breath, but it may cause side effects such as confusion, drowsiness, or hallucinations.
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Understand the emotional and mental needs of the dying person
Understanding the emotional and mental needs of a dying person is a crucial aspect of providing end-of-life care. Here are some detailed instructions to help you navigate this challenging but meaningful process:
Firstly, it is important to recognize that dying individuals may experience a range of emotions and mental states. They may fear the unknown, worry about those they will leave behind, or fear being alone. These fears can be exacerbated by the reactions of loved ones and medical professionals. Withdrawing from the dying person due to grief or a sense of helplessness can deepen their sense of isolation. Additionally, the dying person may experience mental confusion, exhibiting strange or unusual behavior that makes it challenging to connect with others.
To address these emotional and mental needs, consider the following:
- Provide physical contact and comfort: Holding hands, gentle massages, and other forms of appropriate touch can offer reassurance and comfort.
- Create a comforting environment: Use soft lighting, play low-volume music, and allow for quiet moments with fewer people. These adjustments can promote relaxation and reduce pain.
- Involve the dying person: If they are able to communicate, ask them about their needs and wants. Encourage them to share their thoughts and feelings without worrying about how you will respond. Your presence and attentive listening can be invaluable gifts.
- Address spiritual needs: For some individuals, spiritual concerns are just as important as physical ones. Help them find meaning in their life, make peace with their circumstances, or end disagreements with others.
- Manage mood swings and anger: Dying individuals may experience severe mood swings and lash out at caregivers and loved ones. Validate their feelings, reassure them of your support, and remember that their anger may be a way to express frustration or discomfort.
- Seek professional support: Contact a counselor or hospice worker familiar with end-of-life issues. They can guide conversations about feelings and provide strategies to manage mental and emotional distress.
Remember, each person's end-of-life journey is unique, and their preferences and needs should be respected. By addressing their emotional and mental needs, you can enhance their comfort, dignity, and peace during this challenging time.
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Frequently asked questions
Dying in a hospital is not ideal for many people, and there are several alternatives to receiving end-of-life care in a hospital. These include dying at home, in a nursing home, or in a long-term care facility. Hospice care is also an option, which can be provided at home or in a community-based setting.
Receiving end-of-life care outside of a hospital can provide a more comfortable and private setting for the dying person, allowing family and friends to come and go freely. It also reduces the disruption, confusion, and sleep deprivation that can come with hospital stays.
It is important to make plans for end-of-life care in advance, including knowing the type of care you need and want, where you can receive this level of care, and the costs and availability of family and friends to help. Having these documents in place ensures that medical staff can provide the care that aligns with your wishes and helps family members make informed decisions.
