What Is A Terminal Illness Or Condition?
A terminal condition or illness is one that is life-limiting and will cause death in the near future. It is expected that the illness will lead in permanent unconsciousness (also called a permeant vegetative state) in which a person’s brain no longer functions which the person is unlikely to recover from. There are a huge number of terminal illnesses that can include (but not limited to) advanced cancers, multiple organ failure, dementia, neurological conditions, organ failure, massive heart attacks, and strokes.
I’ve Just Been Diagnosed With A Terminal Illness – What Now?
Time stops when you learn that you or a loved one has a terminal illness – some people react by crying and making plans, others may ignore the news entirely. As crazy as it seems at the time, life does go on after a life-threatening diagnosis no matter how you’re feeling and coping.
You or your loved one have probably been working on curing this illness through promising treatments, clinical trials, and other ideas; maybe sometimes it worked, and you feel better. Once the illness is deemed terminal, it’s unlikely that additional treatment will be unlikely to help.
You’re going to need all types of support as you work through your grief, emotional, practical, legal and financial concerns, end-of-life care, as well as funeral plans.
Your First Reactions
Finding out that your illness is no longer curable and that you have less than six months to live can feel like an impossible thing to wrap your head around. One minute, you had your whole life ahead of you, now you don’t.
Remember this above all else: there’s no right or wrong way to handle the fact that you do have a terminal illness and will soon die. Every single person who receives this news feels, acts, and behaves in their own way. This is a high shock to the system and can break your heart into a million pieces. Even if you knew that the diagnosis was possible, it’s a different ballgame to realize that your death is an inevitability.
Some people respond by being silent and digesting the information they’ve learned, while others may weep inconsolably. Still others may be full of anger and fear, while others may feel completely numb and feel no emotions whatsoever.
However you behave is the right way for you to behave.
Most people wonder things like “why me?” “what did I do to deserve this?” and “this cannot possibly be real.
Before you share the news, make sure to allow yourself the time to process what is happening, because once you begin telling people, there will be a lot of questions (and not all of them welcome). When you feel up to it, before you begin to put your affairs in order, try sharing the news with the people you’re emotionally closest to – a family member, clergy, or a close friend. It’s key to remember that people will be upset by this news, maybe they’ll get angry with you, maybe they’ll demand a second opinion, it’s unlikely they’ll know what to say.
Now you’ve got to realize that no matter what or how crappy this feels, you’re going to be pushed into the role of ambassador of your illness, which means that you should learn as much about it. Don’t expect people to easily take the news without disagreeing with you, don’t expect them to have any knowledge of the disease process, and don’t let them try to sell you on snake oil cures. Many normally kind people believe that they are helping by offering alternatives, and if you don’t feel it’s pertinent to your situation or choices, ask them to stop.
In fact, you may have to ask people to stop if you become overwhelmed by anything or anyone. And never, ever, ever feel as though you have to explain anything about what your feeling or your disease to anyone. Not everyone deserves that information, especially if it makes you uncomfortable.
Anticipatory Grief:
A threatened loss is often marked by anticipatory grief, which means dealing with grieving a loss that has not yet occurred. This can include the death of dreams, the loss of a future, the loss of independence, which can lead to a number of very real, very valid feelings, including:
- Extreme sadness
- Anger is a common reaction to learning a loved one is going to be dying soon
- Denial that the person will actually die
- Anxiety about how, where, and when the death will occur
- Depression often sneaks it’s wily claws into the brains of all involved with this person and the situation
- Denial occurs when people don’t believe the doctors diagnosis, suggest alternative treatments, and pretend that everything is fine.
- Acceptance is generally a pretty fluid stage of anticipatory grief. Some days, you may feel at peace with the diagnosis and what is to come, other days you may rage against what is happening to you and your loved ones..
- Guilt is what happens when people are grateful that a loved one has died because it means the suffering is over and that they are at peace. It may be one of the more upsetting things you feel and you may feel that it is wrong, but it is both normal and acceptable.
Please read more about grieving
Please read more about loss
Please read more about coping with grief
The Practical Matters At The End Of Life
Most of us don’t like to imagine ourselves dead or dying until it’s too late because it’s morbid and depressing. However, practically, you need to make sure your ducks are in a row before you are too sick to ask for the kind of end of life care you want. If you don’t create plans for your end of life, your next of kin will be faced with these major decisions.
Advance Care Directives
Using an advance directed makes certain that your health care and end-of-life needs are both known, respected, and to be followed to the letter. An advance directive should very clearly state what you want to have happen in the event that you’re unable to make your own decisions.
Remember: State laws vary, so make sure that any advance directive complies with local regulations. A local hospital, hospice, or seniors’ organization may have staff members who can help prepare an advance directive. Or, you can always have your loved one discuss this with a lawyer qualified in elder law.
An advance care directive is a signed document that address how aggressively doctors should pursue life-sustaining measures and whether quality of life or comfort should be paramount concerns.
Two common and important advance directives are:
A Living Will: A living will allows you to document your wishes concerning medical treatments at the end of life. Before your living will can guide medical decision-making, two different doctors must certify the following:
- You are unable to make medical decisions
- You are in the medical condition specified in the state’s living will law (such as “terminal illness” or “permanent unconsciousness”)
- (Other requirements also may apply, depending upon the state.)
Healthcare Proxy or Medical Power of Attorney: this allows you to specify a person (who is called a Healthcare Agent) whom you very much trust to make decisions for you when you are unable to do so.
Before medical power of attorney goes into effect, a physician must conclude that they are unable to make their own medical decisions.
Additionally:
- If a person regains the ability to make decisions, the healthcare proxy cannot continue to act on the person’s behalf.
- Many states have additional requirements that apply only to decisions about life-sustaining medical treatments, so check local laws so you can stay in compliance .(For example, before your proxy refuses a life-sustaining treatment on your behalf, a second physician may have to confirm your doctor’s assessment that you are incapable of making treatment decisions.
These wishes should be communicated fully with everyone involved. Make sure you or your loved one takes the following steps:
- Make a copy. Anyone named as a healthcare proxy in a medical power of attorney for health care should have – or know where one is – a copy of the document and know the goals for medical care.
- Talk to your family: Your family members need to know your wishes for end-of-life medical care. and while this is a hard topic to discuss, it is very important and should be brought up every few months.
- Talk with medical staff. Talk with nurses and doctors to ensure that your wishes are understood and can be followed. Give them a a copy of the advance directive to place in the your permanent medical record.
DNR Orders (Do Not Resuscitate)
A do-not-resuscitate order (DNR) alerts all members of your healthcare team to avoid cardiopulmonary resuscitation (CPR) and/or defibrillation if the your heart stops beating. This document is used only when heroic measures are unlikely to revive a dying person or to prolong meaningful life. Generally, during the last stage of a terminal illness, CPR is not very likely to result in successful resuscitation. This order should be renewed and discussed often with the health care team. Some things that may help you and yours to decide upon instating a DNR
- Make a Decision About When a DNR Should be Used. Discuss the need for a DNR with your loved ones and the healthcare team. There are a huge amount of types of DNR, and forms – laws vary state to state, so it’s important to discuss this issue with your nurses and doctors.
- Medical Care Will Be There even with a DNR in place, you will continue to receive appropriate medical care to treat short-term illnesses, injuries, medication to relieve pain, and/or other symptoms. You can still call EMS to your home and can still give oxygen, medications, and fluids and transport you to a hospital, if necessary.
- Putting It All In Writing: without having the signed copy of your DNR, all health care and emergency personnel are required to attempt CPR – even if you’ve has asked family members to request that they forgo this measure.
- Hold Onto The Originals: As with most things, only originals are considered to be valid, so keep several originals of a DNR form around. Always keep one original handy in the person’s home; the other should be carried by you or your caregiver at all times.
- File Your DNRs: Talk to neighboring hospitals and skilled nursing facilities to keep a file of your DNR in your chart
What Are Some Life-Sustaining Treatments?
In most cases, life-sustaining medical treatment is any medical intervention, medication, or anything mechanical or artificial that sustains, restores, that would prolong the dying process for a terminally ill person. This is one of the many reasons that advanced directives are so important – if you know what you want to do at the end of life, you need to contact a lawyer and draw up an advanced directive that specifies exactly what you do and don’t want to have happen should you become medically incapacitated.
It is difficult to predict these things in advance, but it’s worth considering whether you will or won’t want the following life support options:
- Mechanical ventilation: A machine called a ventilator or respirator forces air into the lungs for people who are unable to breathe on their own.
- Intravenous (IV fluids) hydration: A tube inserted into a vein supplies a solution of water, sugar, and minerals for people who are unable to swallow.
- Artificial nutrition (tube feeding): A tube inserted through the nose into the stomach supplies nutrients and fluids for people who are unable to swallow.
- Hemodialysis: Blood is circulated through a machine to maintain the balance of fluids and essential minerals and clear waste from the bloodstream for people whose kidneys are unable to perform this function.
Comfort measures, such as are medicines or procedures used to provide comfort or ease pain, are not usually considered life-sustaining. In some states, tube feedings and IV fluids are considered comfort measures. States have different definitions, so be sure you know what your state says.
You can learn more about the ethics of life-sustaining treatments from the AMA.
What Is Hospice And Palliative Care?
The aim of palliative care to make the person feel supported while giving them a good quality of life, rather than cure their illness.t is an approach that focuses on the relief of pain, symptoms, and emotional stress brought on by serious illness. For some, palliative treatments may be used to alleviate the side effects of curative treatment, such as relieving the pain associated with chemotherapy, which may help you tolerate more aggressive or longer-term treatment.
The term “palliative care” refers to any care that alleviates symptoms, and can be helpful at any stage of an illness, even when there is still hope of a cure for the disease.
Hospice and palliative care is an increasingly popular option for people whose life expectancy is six months or less (life expectancy at the time of entering hospice, it’s worth noting, may vary between states and individual hospice providers) without any hope for curing the disease. Hospice care works to make the person more comfortable in their last days but it is not curative.
Hospice care involves palliative care, which is used to treat they symptoms and pain without doing ongoing curative measures, enabling you to live your last days to the fullest, with purpose, dignity, grace, and support.
Hospice is an idea, a philosophy of care. While there are buildings called hospices, today “hospice care” doesn’t mean care must be delivered at some special facility. The idea is that if someone you love has an incurable illness, and treatment to prolong life and keep the illness under control no longer works, there is still something that medical professionals can do. Even if life cannot be prolonged, comfort can – and should – always be provided.
For many terminally ill patients, using hospice and palliative care in the home offers a dignified and comfortable alternative to spending their final months in ta hospital, far from family, friends, pets, and all that you know and love. Palliative medicine helps manage pain while hospice provides special care to improve the quality of life for both for you and your family.
Seeking hospice and palliative care isn’t about giving up hope or hastening death, but rather a way to get the most appropriate and best quality care in the last phases of your life.
Hospice care is directed at the entire family, so wherever it’s provided, it involves more than just providing nursing care and medications for comfort. Most hospice facilities have a spiritual advisor who can come to the home and visit whenever spiritual guidance is needed for you or your family, independent of religious background. Hospice providers also offer social workers who can help you put your affairs in order and work with you and your family about what’s going to happen. Nurses will come in to assess how you are doing physically, confer with caregivers, go over medications, and address any issues that may have come up – medical or not. Some hospice providers also offer volunteers who can come over and help you with your responsibilities and relieve your caregiver for a couple of hours.
What Are Some Of The Benefits Of Hospice And Palliative Care?
If you become terminally ill, having hospice can help to reduce anxiety for both you and your family by helping you make the most of the time remaining and achieve some level of acceptance. In fact, research published in the Journal of Pain and Symptom Management found that terminally-ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.
Hospice Respects Your Wishes:
It can be nearly impossible for some family and loved ones to let you end your life the way you’d like it to be. In hospice, you will get to assert the kind of care that you want in the way you want it. This treatment plan will be followed closely by all staff members and ensures that your family must follow it as well.
Hospice Focuses Upon The Family:
As the norm becomes hospice care given in your home, even if you must go to a facility or hospital, the focus is to find a calm, quiet place to be with your loved ones. Hospice works closely with all members of your family to ensure that you are able to feel at ease and comforted.
Hospice Provides Help For Grieving Families:
The finality and the grief of the death of a loved one is something each member of your family and loved ones must go through, and hospice can provide the kind of support and guidance your family may need to cope. Working with the hospice team can help your family deal with all of the emotions that occur following a major loss. Social workers and chaplains are always a phone call away for you and your loved ones. After you pass, this type of support will continue as your family works their way through your through the complicated grief and grieving process.
Hospice Is Not One-Size Fits All:
The treatment plan that you and your family put into place when you begin hospice care is focused upon one thing: you. Your plan can be changed at any time and if you want, you can even leave hospice to pursue treatments. People who work in hospices are very knowledgeable about the things you and your family will experience during your final months.
Hospice Gives Dignity:
When you die, how do you want to go? Do you want to be comfortable in your own space, surrounded by loved ones, or would you rather undergo painful medical treatments that may do more harm than good. Dying a dignified death is very important to a lot of people.
Hospice Provides A Plan:
One of the biggest things that occurs during planning hospice care is to make sure that you and your loved ones are as comfortable as you can be. The treatment plan will be comprehensive and exhaustive to make certain you have the kind of care you want. Hospice isn’t a single person, it is a group collaboration between doctors, nurses, social worked, clergy, volunteers, and nurses aides, and the plan of care for hospice depends upon making your last days as special as they can be.
Hospice Can Lessen Costs:
Today, medical bills can easily cost a family everything, and financial concerns are often a part of your worries about your care. You may not want to leave anyone in debt. Hospice takes the guesswork out of the financial aspect, as it is both covered by Medicare/Medicaid and is payed out at a single daily rate.
A Guide To Hospice And Palliative Care:
Your hospice team will work with you and your loved ones to create a plan of care suited to your unique needs. Sometimes, your loved ones may be invited to help with your care (notably if the hospice occurs in the home), and all are encouraged to comfort you.
Hospice programs vary greatly but generally share certain characteristics:
- Array of Services. Hospice staff can administer pain medications, provide nursing care, and offer emotional support. Before and after a death, emotional support is extended to caregivers, too. Many programs offer bereavement counseling for a year after a death of a loved one..
- A Special Team: Most hospice teams include specially trained doctors, nurses, aides, social workers, counselors, therapists, people who offer spiritual care, and volunteers, according to the Hospice Foundation of America..
- Insurance/Medicaid/Medicate Coverage. Hospice services are covered nationwide under Medicare and in at least 45 states and the District of Columbia under Medicaid for anyone who has a prognosis of six months or less to live. Many private insurers and health maintenance organizations also offer coverage but may be costly – it’s best to shop around to find a hospice that’s best for you and your loved ones.
The services you receive from hospice are focused upon your needs, wants and desires and may change over the three phases of hospice care, which are:
- The last phases of an illness
- The dying process
- The bereavement period
The types of care you may need may be provided by the following hospice staff members
Nursing Care: Your nurses work to monitor your symptoms and medication as well as helping educate you and your loved ones about what’s happening. Your nurse is also the special link between you, your family, and the doctor.
Hospice Doctors: Your doctor will the plan of care you have created, make any changes, and works very closely with with the entire hospice team.
Social Services: A hospice social worker will work to counsel and advise you and your family. He or she will become your community advocate, ensuring that you have access to any resources you need.
Spiritual Support and Counseling. Clergy and other spiritual counselors are available to visit you and provide spiritual support at home. Spiritual care is a personal process, and may help you explore what death means to you, resolve any “unfinished business,” helping you to say goodbye to loved ones, as well as performing a specific religious ceremony or ritual.
Home Health Aides and House Aids: Hospice home health aides provide comforting care to you, like helping you bath, shave, and care for you. Some hospices have aids for light housekeeping and meal preparation.
Trained Volunteer Support: Volunteers have long been the backbone of hospice and can listen, offer you compassionate support, and assist with everyday tasks such as shopping, babysitting, and carpooling.
Physical (PT), Occupational (OT), and Speech Therapies (ST), can help you develop new ways to perform tasks that may have become difficult due to illness, such as walking, dressing, or feeding yourself.
Respite: Respite care gives your family a break from the intensity of caregiving. A brief inpatient stay in a hospice facility, for example, can provide a “breather” for both you and your caregivers. Be sure to check with your hospice to see if this is available at your chosen hospice.
Inpatient Hospitalization: Even if your hospice is in the home, there may be times when you’ll need to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. Occasionally, medical intervention may be recommended to ease the dying process that requires around-the-clock nursing care at a facility. Still, your hospice team will arrange inpatient care, remain involved in your treatment, and your loved ones
Bereavement Support: Bereavement is the grief and loss you feel when one of your loved one dies. Your hospice care team will work with your family to help them through the grieving process as much as possible. This kind of support may include a counselor visiting your family at specific periods during the first year, as well as calling your loved ones, sending letters, and suggesting specific support groups. If necessary, your hospice team will also refer your loved ones to medical or other professional care.
Common Hospice Myths Debunked:
Hospice has becoming increasingly popular in the past 20 years, but there is still quite a number of myths that people believe about hospice. Here are some hospice myths debunked:
Myths And Realities of Hospice
| Hospice Myth | Hospice Reality |
|---|---|
| Hospice care is limited to six months. | While patients beginning hospice often have a prognosis of less than 6 months, hospice care is given as long as it is necessary. |
| Hospice is a place. | In the past, this was true, and there do exist hospitals and nursing homes, most frequently, hospice is provided in the home. |
| Hospice makes you die more quickly. | Hospice does not tend to prolong or decrease your life, however it does greatly increase the quality of the time you have left. |
| Hospice means "giving up." | Hospice isn't giving up on your life or treatments, it's a tool to use after all treatments have been exhausted for your terminal illness. Hospice also takes the guess-work out of dying and allows you to focus upon living. |
| Hospice is only for people with cancer. | While many people who have cancer opt to begin hospice care, cancer is not a requirement. Any illness with an incredibly poor prognosis may be able to begin hospice care. |
| If you're in hospice and find yourself in remission, you cannot go back to traditional medical treatments. | If you begin to feel better and are showing signs of recovery and believe that traditional treatments may extend your life, you can leave hospice at any time. You can also stop receiving hospice care at any time. This is your personal decision. |
| Your family has to provide hospice care. | While family members may choose to be around more often, a hospice team consisting of doctors, nurses, social workers, chaplains, nurse's aides and volunteers are responsible for providing care. |
| No matter what, you die in pain. | Medical professionals who work in hospice are well-versed in relieving the pain associated with dying. Pain management will be adjusted throughout your care and different stages of dying. |
| Hospices only use volunteers for your care. | This is a very dangerous myth as nothing could be further from the truth. Hospices hire medical professionals to do the care for people in hospice. |
| Hospice can only be brought in during the last weeks of life. | As soon as a person is deemed to have a terminal illness from which they are not expected to recover, a person can receive hospice care. |
| The referral for hospice must come from a physician. | Any one can make that referral - a friend, a loved one, a nurse, or you yourself can refer you for hospice care. |
| Hospice means that you no longer have a say in your treatment plan. | Hospice treatment plans are always visited and revisited according to the specific needs of the individual and include collaboration with the patient, the family, and the members of the care team. |
| Hospice provides around the clock, 24 hour a day care. | While hospice is always available all day and all night, the staff doesn't stay throughout the day and night. |
| Hospice stops giving the dying person food or water. | Hospice always provides food and water to anyone in their care, however, there are a good number of illnesses that make the patient lose their desire for food and water, which is not forced. |
| If you're in hospice, you can't go to the hospital. | Anyone who is in hospice can go to the hospital to treat or manage symptoms of the disease process, providing that the hospital care isn't aimed to cure the patient. |
| Hospice only helps with pain relief. | While one of the main goals of hospice is to allow you to remain comfortable and out of pain, hospice takes a whole person/family approach to all types of care. |
| If you go to hospice, you don't get any more of your medications. | Hospice was created to allow people to be comfortable at the end of their lives, which can mean giving up some medications (like chemotherapy and its side effects), other important medication is always available. |
| Hospice sedates their patients for the rest of their lives. | While one of the main goals of hospice care is to reduce pain, which can cause drowsiness, pain medications are actually given only according to what makes the person comfortable - not to sedate them completely. |
When Should Hospice And Palliative Care Be Considered?
As with all types of end-of-life decisions, the choice to enter hospice is very personal and depends very much upon your feelings about death, dying, and spirituality, as well as a terminal physical illness.
Hospice care isn’t for people who are receiving beneficial treatments from their therapies, especially when these treatments are working to cure your illness. Palliative care can be extremely useful to people receiving any type of illness, including treatments that are working on curing the disease. People who develop very serious illnesses and find that the curative treatment is no longer working, that additional treatments may be harmful, or may be life-expending for a few weeks or months (but make you incredibly sick) are the people who may be interested in hospice, especially when the hope of recovery is gone.
While the hope of recovery may be gone, you still may have hope to have some good time with loved ones and hoping for a dignified and pain-free death.
There’s no single point at which you know that it’s time for hospice care, it’s only done when you’re ready. Having some of the following may indicate that hospice care would work well for you:
- You’ve given up treatments for your disease as they are not effective
- Your symptoms are getting worse and require increasing hospital visits
- You’re frequently admitted to the ER for symptoms, your condition has been stabilized, but your illness is really progressing and affecting the quality of your life.
- You want to be at home, not the hospital or nursing home
Remember that before you enter into hospice care, your hospice team will meet with your doctor to discuss your medical conditions, life expectancy, and your current symptoms. In order to qualify for hospice, you must no longer respond to curative treatment and approaches as well as having a life expectancy of less than six month (don’t be alarmed, your hospice care isn’t immediately cut off at six months.)
Before entering into a hospice program, the hospice meets with the patient’s doctor to discuss life expectancy, medical conditions, and current symptoms. To qualify for hospice, a patient must no longer respond to curative treatments and have a life expectancy of less than six months, however hospice care does not end at six months. The hospice must also discuss levels of care, your support system, insurance, medications, pain levels, and any equipment for your home (such as a hospital bed).
After this has been performed, your hospice will meet with you and your family to carefully discuss the philosophy of hospice, your expectations, as well as what you can expect. You and your family will work with your entire care team to provide you with a unique care plan to help you best. If, after you’ve met with the hospice, you’re displeased by some aspect or another, you can always get a referral to another hospice.
How Do I Choose A Hospice?
There are an overwhelming amount of hospice agencies popping up around the country and the choice may be confusing for you and your family:
Which one is best?
How do I know what the best is?
How am I supposed to choose when they all sound the same?
A lot of us were raised in an environment in which we are scared to question the doctor about anything because they are the boss of you and your body. Times have (thankfully) changed and talking closely and asking questions of your doctor is the new normal – in fact, it’s expected. This is the time you need to talk frankly with your doctor and ask the questions you need to know, as this is you or your loved ones final choices for care.
Here are some of the questions you might want to bring up (for home hospice):
- How many hospice patients does each type of caregiver have to care for
- Is the hospice accredited by the Joint Commissions, or Medicare?
- Can you get references from other professionals?
- How often will the nurses come? Therapies? What about baths?
- What should you expect from a typical visit?
- Are the caregivers licensed by state and bonded?
- When calling to report something to your nurse, how quickly will they respond?
- Will the same people be providing care during each visit?
- Has the hospice developed a treatment plan in writing that’s given to all providers to make sure your care is smooth?
- How is the care plan developed for each person and their loved ones?
- What kind of services should you expect in the home and at what frequency?
- How much responsibility will fall to a family caregiver?
- Do they offer respite?
- Will they negotiate with you and your family?
- What happens if you have to go inpatient?
Make sure that you and your family has receive copies of this care plan as well, listing specific duties, work days and hours, and the contact information for the hospice care supervisor, and each member of your treatment team.
To Locate A Hospice Near You:
In the U.S.: The Hospice Foundation of America at 1-800-854-3402 or The National Hospice and Palliative Care Organization at 1-800-658-8898
In the UK: Hospice UK at 020 7520 8200
In Australia: Palliative Care Australia at 61 2 6232 0700
In Canada: Canadian Hospice Palliative Care Association
National Agency Location Service – Search for home care and hospice by location, payment types, services offered, and more. (National Association for Home Care and Hospice)
Other Resources For Hospice: