end of life elderly man in hospital bed

End of Life Care: The Complete Guide 2021

Losing a loved one can be an upsetting experience. We will review end of life signs, symptoms, end of life decisions, what happens at end of life, palliative care and hospice care, among other things so you better understand what to expect. In addition, we review end of life care planning which can help make you more prepared and decrease stress during a trying time.

While they are in the last or final stage of life, caregiving for loved ones can be physically and emotionally exhausting.

While moving through this journey, do what you can for your loved one. Keep in mind you are not expected to know everything.

Most importantly, take peace in knowing you are doing the best you can.

 

Having a better understanding of what your loved one is experiencing may help you better anticipate the needs of your loved one.

A person who is dying will appreciate quality comfort care that helps with their physical comfort and supports their emotional and spiritual needs.

 

end of life decisions holding hands with elderly patient in hospital gown

What is End of Life Care?

End-of-life care is health care provided to improve the quality of life for those with a serious illness.

The common goal of late stage care is comfort care, to keep the patient as comfortable as possible, and to control symptoms such as pain or anxiety.

 

Why is End of Life Care important?

Quality end-of-life care is important because it enables people to die peacefully, comfortably, and with dignity.

 

What is End of Life Care Called?

Because there is a lot of focus on symptom management and improving quality of life, many people call end of life care comfort care.

End of life care is sometimes called final stage care, end stage care, hospice care, EOL care, and late stage care.

 

 

senior-patient-signing-medical-decisions

 

What are End of Life Decisions?

 End of life decisions usually refers to what life support measures people want when they are dying.

For example, some life support measures include:

  • Cardiopulmonary resuscitation, also called CPR, can be performed if your heart or breathing stops.
  • A feeding tube could be used to provide nutrients if you cannot eat or drink.
  • A ventilator or breathing machine pushes air into your lungs so that you can breathe.

 

When thinking about end of life decisions, you can talk to your health care providers for insight.

  • Health professionals have a lot of knowledge about these complex decisions, can review common end-of-life issues, and provide the pros and cons of the decisions.
  • It is also a good idea to discuss these things with your family, so they are aware of what you want. We review more about advance care planning below.

 

 

What are the signs of End of Life?

If you think it may be time for end stage care or are not sure, have a conversation with your loved one’s doctor.

End of life signs may include:

  • Several hospital admissions the past year for the same condition or with the same type of symptoms
  • Multiple emergency room visits for the same illness, which seems to continue progressing and negatively impacting their quality of life.
  • Your loved one does not want to go to the hospital or want any more treatment. Instead, they want to stay at home

 

 

When Should End of Life Care or Final Stage Care Start?

This is a difficult question. There is no specific point of an illness that identifies it as the time to start final stage care. Each person, and the progression of their disease, may vary significantly.

To ensure you understand the likely progression of your loved one’s condition, ask the provider to discuss the prognosis of the disease.

Describing the prognosis means the doctor will explain the expected development of the disease, the signs and symptoms your loved one will likely have, and the expected duration of the disease.

This will give you a better idea of the progression of the condition, so you know what to expect.

 

end of life symptoms doctor standing over patient

End of Life Symptoms

You may notice physical changes as your loved one moves closer to the end of life.

End-of-life symptoms vary not only on the individual but also on their medical conditions and treatments.

In addition, some of these changes may be caused by other things, for example, treatment or medication side effects.

 

Physical end of life symptoms may include:

  • Restlessness, agitation, or confusion
  • Drinking less or loss of appetite.
  • Difficulty swallowing
  • Sleeping more or increased periods of drowsiness
  • Becoming delirious or confused
  • Communicating or talking less
  • Loss of consciousness
  • Coldness, swelling in the hands or feet
  • Skin looks slightly blue or patchy (mottled)
  • Pain
  • Bowel or bladder problems, for example, constipation or loss of control
  • Irregular heartbeat
  • Nausea or vomiting
  • Reports of seeing or hearing someone who has already died
  • Dyspnea, or breathlessness. Even if end of life breathing and end of life oxygen levels are normal, the patient may still feel breathless
  • Irregular breathing, difficulty breathing, or having pauses in breathing
  • Crackling sounds when breathing.

 

Some symptoms will not be upsetting to your loved one.

Other symptoms, like pain or breathlessness, may be uncomfortable and distressing.

Speak to the provider about medications and other comfort measures that can be provided.

 

 

What is End Life Anxiety?

Anxiety is one of the common end of life issues people nearing death may experience.

Some people may experience some mild anxiety, while others may experience severe anxiety with panic attacks.

If your loved one starts showing signs of anxiety, try to maintain a calm environment.

You can try distraction, like talking about other things.

Because some anxiety at the end of life is normal, you will want to validate their feelings.

Mindful breathing, inhaling, and allowing exhalation (breathing out) to be longer than inhalation, can help one relax.

Don’t hesitate to contact the provider or health care team and ask for instructions on how to help with your loved one’s anxiety.

Some medications may help treat the anxiety.

 

 

What is End of Life Delirium?

Delirium is a complex psychiatric syndrome, and can be referred to as confusion or impaired mental status.

Sometimes patient’s have a change in their behavior or alertness, and this can fluctuate and may get worse in the evening or at night.

 

Terminal delirium, also known as terminal restlessness or terminal agitation , is a particularly distressing for of delirium that may occur near end of life.

The symptoms vary but are usually somnolence followed by memory disturbance, thinking difficulty,  altered awareness, altered thoughts,  communication difficulty, and disorientation.

 

Delirium is not the same for each person. It can be challenging to recognize delirium because it may look like other illnesses.

If you notice changes and suspect delirium in your loved one, contact their health care provider.

Delirium may be something that can be reversed, if they can find the underlying cause.

If it is not something that can be reversed, medications may improve their quality of life.

 

 

End of Life Fever

Fever is another common symptom at the end of life.

It may indicate there is an infection, for example, end-of-life pneumonia.

But fever may have other causes.

  • The workup and treatment of fever will depend on the patient’s goals and wishes, life expectancy, and discomfort associated with the fever.
  • If the patient is no longer receiving treatments for their condition and is on comfort care only, the question is whether the patient is uncomfortable.
  • Suppose the fever is going to be treated. In that case, the medication used will depend on the patient’s medical condition and if they can take oral medications, suppositories, or if intravenous medication is required.

 

 

How End of Life Symptoms Can Cause Pain

People near the end of their life may or may not experience pain.

If one does experience pain in terminal illness, that pain can be caused by things such as:

  • Treatments like surgery or radiation
  • The illness or medical condition that is causing their death
  • Other chronic conditions they may have, for example, arthritis or diabetic neuropathy
  • Side effects of treatment or one’s condition, like constipation or skin ulcers

 

People respond differently to pain and pain medication.

End of life symptoms in elderly patients may be different than pain management for a young adult post-operatively.

 

If the prescribed pain medications are not managing your loved one’s pain, call the provider to see what changes can be made.

 

 

What happens at End of Life?

Each situation is unique, but some common things that may happen to someone who is dying include:

  • When someone is nearing death, they commonly have a deterioration in brain function, and their metabolic system deteriorates.
  • Reflexes, like their cough and swallowing reflexes, and other body functions start to slow down.
  • The person likely will become progressively more fatigued and may respond less to others.
  • Chemical imbalances and decreased blood flow to the brain may cause the person to become confused and disoriented. Some people have hallucinations or visions of loved ones that have already passed away.
  • The body temperature can fluctuate as blood circulation slows, so someone’s skin may be cold at one point and warm at another.
  • Taste and sense of smell start may diminish, decreasing interest in eating and drinking. Less fluids will mean darker urine and reduced urine output.
  • Decreased blood flow may change breathing patterns, which is usually not painful. Some people have pauses in their breathing; others may have shallow breathing that speeds up.
  • The circulation changes may also make the heartbeat weaker, and skin can change color; it may become pale greyish blue or mottled.

 

Slowly the patient may go in and out and then into complete unconsciousness. Most expected deaths are not painful. Instead, you gradually lose consciousness.

 

How can You Help a Person who is Dying?

People who are dying usually need care in these areas

  • Physical comfort
  • Mental and emotional needs
  • Spiritual support
  • Practical tasks or daily care

 

end of life comfort care bedside home

Caregiving at the Last Stage of Life

The focus of last stage care is usually to manage symptoms and provide physical, emotional, and spiritual comfort.

Through your words and actions, you are letting your loved one know of your love and commitment.

 

When caring for someone nearing the end of life, try to create a peaceful atmosphere and keep your loved one clean, warm, and comfortable.

Be a good listener and allow your loved one to express their feelings if they want to.

This is a very stressful time for you. Caring for someone who is dying is physically and emotionally draining.

Take time to care for yourself, so you stay healthy and recharge your batteries.

For self-care tips, read our blog post Self-Care Tips for Caregivers.

 

 

End of Life Providing Physical Comfort

Comfort care is an essential part of end of life care, especially during the final hours.

It helps soothe someone who is dying.

Some things you can do include:

  • If they have pain, ensure they are taking their pain medications. If the pain medications are not working, call the provider for better pain management.
  • To help with fatigue, try to plan visits and other activities for your loved one while they are most alert.
  • Sitting with your loved one, gently holding their hand, talking to them softly, playing their favorite music (in a low volume), and keeping the atmosphere calm may bring them comfort.
  • Keep ice chips near; they can comfort a dry mouth and help with hydration.
  • You can moisten your loved one’s mouth and lips with a damp cloth or products like glycerin swabs and lip balm.
  • It is thought for many years that hearing is the last sense to go when someone is dying, and research shows that some may be able to hear even when they are unresponsive. Being present, in person or by phone, can be meaningful and bring comfort to your loved one.
  • Talk to the health care team if your loved one is showing signs of physical discomfort. Likely some measures can be taken to provide comfort to your loved one.

 

 

Mental and Emotional Needs at the End-of-Life

There may be emotional pain and suffering for some at the end of life.

Emotional needs at the end of life vary, but some common concerns include:

  • Someone who is dying may worry about loved ones they will be leaving behind. They may feel they did inadequate planning for end of life.
  • Others may feel depressed about milestones they will not be able to attend, like graduations, weddings, or holidays.
  • Many worry about the loss of dignity or control they have as their physical condition declines.
  • Some people are afraid of feeling alone. They may feel isolated or may have anxiety about the unknown.
  • Some are conflicted because they do not want to be alone, but they also fear being a burden to family

End of Life Emotional Comfort

Encouraging conversations about what they are feeling may provide emotional comfort.

Asking your loved one what you can do or what concerns they have may allow them to express themselves and feel better.

Simply being present with your loved one can be comforting for them.

Maintain a calm, comforting mood, like soft lighting and low volume music.

Your quiet presence can be a profound gift for your dying loved one.

If your loved one is experiencing depression or anxiety, talk to the health care team, there may be medicine available to help.

hand with match lighting candle

Spiritual Needs at End of Life

Just like physical and emotional needs vary, so do one’s spiritual needs at the end of life.

Elderly spiritual needs can include finding peace and resolving unsettled issues with loved ones.

Some elderly needs involve finding meaning in one’s life and possibly end disagreements with others.

 

Many people find solace in their faith, while others may struggle with their spiritual beliefs.

  • Praying, reading religious passages, or listening to religious music may bring spiritual comfort to your loved one.

 

For many, life is about love and searching for meaning and purpose.

Some people who are dying may find comfort in reflecting back on their life on what their life purpose has been.

  • Family can talk to the dying person about their meaningful relationships and how they have influenced each life.
  • Sharing fond memories and telling your loved one how you feel may help some people who are dying find peace.
  • Listen to their concerns carefully without passing judgment or imposing your own beliefs.
  • Ask your loved one what their spiritual needs are so that you can help them.

 

Scheduling a visit from a social worker or with someone from their religious community may also bring comfort.

People from their religious community can pray with your loved one and provide words of wisdom and advice that may comfort and relax them in their final days.

 

End of Life Ethical Issues

Ethical dilemmas may occur during end of life care.

Patients and families may be experiencing charged emotions, loss of control, or grief.

 

Some examples of end of life ethical issues include:

  • Autonomy is a patient’s right to self-determination, the right to decide what care they do or do not want to receive. The patient’s decision, or their autonomy, should be respected, and sometimes this can be challenging for family or health care professionals.
  • Prolonging death, but dilemmas arise when the interventions cause poor quality of life such as mental deterioration, infections, pain, or serious drug reactions.

 

If you have some questions or concerns about the care your loved one is receiving, speak to the health care team.

You can ask for a family meeting for clarity on the issue.

 

End of Life Decisions – Care Options

One of the many end of life decisions  is where do you want to receive end of life care.

When possible, a person’s preferences for final stage care should be the main factor when reviewing late stage care options.

 

End of Life Decisions – Where to Receive End of Life care?

  • There are different settings where one can receive late-stage care. Some people prefer to receive end of life care services in their private residence, while others may prefer a long-term care facility or a hospital setting.
  • Palliative care and hospice care help improve quality of life and should be considered for those with a serious condition.

 

panorama-woman-with-cancer-touching-window

END OF LIFE DECISIONS – TYPES OF END OF LIFE CARE

End of life decisions include what type of care do you want to receive.

Deciding if and when you want palliative care or hospice care is commonly asked when discussing end of life decisions.

Below we review palliative and hospice care, so you better understand what they are and how they can benefit your loved one.

 

Palliative Care

You do not need to be at the end of life to receive palliative care.

Palliative care improves the quality of life for patients who are seriously ill.

 

What is Palliative Care? What is the Goal of Palliative Care?

The goal of palliative care is making the patient comfortable, relieving side effects, emotional stress, pain relief, symptoms, and other complications associated with their medical condition.

  • It is available any time during an illness, and you can receive it while receiving treatments.
  • Patients can receive palliative care services at home, in a long-term care facility, or a hospital.

 

Typically, a palliative care team is involved in the care.

The team usually consists of doctors, nursing staff, pharmacists, social workers, nutritionists, religious or spiritual advisors, and also other professionals.

The care team works with the patient, family, and the treating provider to implement a plan.

  • A palliative care team can help improve communication between the patient and their medical providers. The team can also help coordinate care.
  • A palliative care team can emotionally support the patient and family and help manage stress, which is common when dealing with a serious medical condition.

 

Studies show that those who obtain palliative care report improvement in:

  • Pain, shortness of breath, and nausea
  • Communication with their health care team and family members.
  • Emotional support.

hospice care nurse talking-to-a-daughter

Types of End of Life Care

Hospice Care

Hospice care services provide medical care to help someone who has a terminal illness live as well as possible and improve their quality of life.

It provides comfort to the patient but also helps support the family.

Hospice care can be invaluable and a common discussion centering around end of life decisions.

Should my love one be on hospice? When should it start? Can we get hospice care in our home?

We discuss hospice care below.

What is Hospice Care?

Hospice is not a place, it is a philosophy of care.

  • Hospice care addresses symptom management in terminally ill patients to enhance the quality of life. Family caregivers can also take advantage of short-term respite care and grief counseling.
  • The multidisciplinary care team helps with the coordination of care and provides information and support in decision making. The hospice team also provides emotional and spiritual support to the dying person and their family.
  • Hospice care is usually reserved for those diagnosed with a terminal illness, and it can be medically certified they have a life expectancy of six months or less. It is for the patient wants to live comfortably and will forego treatments intended to prolong life. Hospice is for those who only want to receive comfort care and symptom management.
  • Hospice care services can be received in a variety of settings. For example, hospice care can be in the home, in a long-term care facility (e.g., assisted living facility or nursing home), in the hospital, or a free-standing hospice facility frequently called a hospice house.
  • Hospice can be discontinued at any time if your loved one’s prognosis changes or if they decide they do not want hospice care. They may resume hospice care again if they are eligible.

 

Talk to the provider if you think your or your loved one could benefit from Hospice Care.

 

 

Palliative Care vs. Hospice Care

What is the difference between palliative care and hospice care?

Palliative care and hospice care both concentrate on supporting the overall well-being of someone with a serious illness.

However, hospice is reserved for the end of life when you have decided to no longer try treatments for your medical condition.

Palliative care, in contrast, can begin at diagnosis.

A person can receive palliative care while also receiving treatment for their illness.

 

 

end of life elderly on oxygen

End of Life Planning

Most people don’t have an end of life plan or think much about death or end-of-life care until they are sick with a serious illness.

Thinking about the type of care commonly needed at the end of life and your perspective on that type of care is a good step to starting advance care planning.

What is End of Life or Advance Care Planning?

Advance directives, sometimes called advance care plans, are legal documents that allow you to identify and communicate your health care decisions.

These documents come into effect only if you cannot express yourself what type of medical care you want.

Why is End of Life Care Planning Important?

Advance care planning allows you to maintain your values and dignity if tough medical treatment decisions need to be made.

You can decide, and put in writing, what treatments and care you want ahead of time so that loved ones do not have to guess or make major medical and potential end of life decisions during a crisis.

Common End of Life Decisions in Advance Care Planning

Advance care planning documents usually address common end of life decisions, so that in the event something happens to you, your loved one’s understand your values and what treatments you prefer.

So, when these end of life decisions need to be made, either you already made them and they are written in your advance care planning documents or you have discussed them with the person you appointed as your health care proxy.

Some common end of life decisions include:

  • Artificial nutrition and hydration. Do you know whether you would want to have nutrition through a feeding tube or hydration through an IV?
  • Cardiopulmonary Resuscitation, or CPR. This is medical care provided when your heart stops beating or you stop breathing.
  • Mechanical ventilation is also called intubation. This is when they put a tube down your throat and hook you up to a breathing machine because you cannot breathe on your own.
  • At some point, it may be determined the curative treatment is not curing your disease. Would you want to stop the treatment aimed at curing the disease and instead pursue comfort care?
  • End of life care at home: Some people prefer to stay home and get end of life nursing care in the comforts of their home. The thought of moving to a facility, like a nursing home, may be frightening.
  • End of life care at hospital: Some may not want to die in their home, they may feel safer in a hospital or long-term care facility setting.

 

Discussions about end of life decisions can be difficult for some families.

 

For tips on discussing advance care planning with your loved one, read our blog post Sensitive Discussions About End of Life Care.

doctor reviewing end of life advance directives at desk

What are Advance Directives?

There are two frequently used types of advance directives that outline the kind of health care you would or would not want.

  • A living will provides details in a legal document that specifies which treatments you would want in the event you were unable to make health care decisions.
  • A durable power of attorney is when you appoint someone to speak on your behalf, and that person you selected can make health care decisions for you if you are unable to.

Getting More Information about Advance Directives

Discuss advance directives with your provider. Frequently the doctor office is a good resource because they likely will have advance directive forms available and staff who can help you fill them out or answer any questions.

 

In addition, numerous organizations will provide information and answer questions about advance directives.

Two well-known organizations are:

Aging With Dignity
Aging with dignity is a nonprofit organization that has developed an easy-to-read advance care planning program called Five Wishes.  They make available an advance directive document legal in most states and is available in at least 30 languages.  You can access the document online or order it in a hard copy format.

National Hospice and Palliative Care Organization (NHPSCO)
The National Hospice and Palliative Care Organization represents programs and professionals that provide hospice care and palliative care in the United States.

Caregiver Resources

There may be resources in your community that could help you or your loved one.

For example, there may be delivery programs, help to lower prescription costs, or respite care programs available in your community.

These programs can be beneficial to your loved one and also alleviate some of your stress. For an in-depth list of community resources, read our post What Are Community Resources and How to Find Them

You may also be interested in reading our blog post:

When Should Someone Be Offered Palliative Care?

 

 

Summary

Quality end of life care provides your loved one comfort care while letting them die with respect and dignity. Understanding what physical, emotional, and spiritual needs your loved one may have in their final stages of life will enable you to advocate for the appropriate care services. A multidisciplinary care team, like with palliative care or hospice, helps provide quality end-of-life care to the patient and emotional support to the family. End of life care planning helps ensures your final wishes are followed.

 

References:

NIH, National Institute of Aging, Providing Care and Comfort at the End of Life

NIH, National Institute of Aging, What Are Palliative Care and Hospice Care?

Helpguide.org, Late Stage and End-of-Life Care

Mayo Clinic, End of Life: Caring for Someone Who is Dying


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