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Summary

Making the decision to change treatment goals from curing or containing a health condition to comfort care is totally personal -- and can be difficult to make.

If you are considering hospice care, we recommend the following six steps:

If you locate a hospice which is willing to also permit you to fight your health condition, an entry into hospice may not be as big a step as it would be otherwise.

An alternative to consider is to look for a palliative care program in a hospital. Palliative care programs focus on treating pain and extending comfort. Patients usually do not have to be certified as terminally ill and can continue with treatment concerning the health condition.

If you would like to speak with an independent counselor about these subjects, counselors are available free of charge at National Hospice and Palliative Care Organization, tel.: 703.837.1500 (www.nhpco.org offsite link)

Step One: Take some time to assess what is important to you now.

For instance, think about the following:

  • Consider the trade-offs that accompany continuing to fight against the advantages and  trade-offs of letting go. 
  • Are you psyched to keep fighting, even if the medical community says there is no hope and time is very short?  
  • Are you willing to go through treatments which may have little chance of working? Are there side effects of the treatments you will likely have to deal with? 
  • Are you more interested in living your remaining days being comfortable? 
  • If your medical care is a drain on your  finances, is the balance shifting to preserving your remaining capital for the needs of your loved ones? 
  • Does your religion or spiritual values permit you to stop working on a cure?
  • What is continuing to fight doing to the lives of the people you love?

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Step Two: If you're leaning toward hospice care, where would you prefer to do it?

Hospice care can be given in your home, in a hospice, a nursing or assisted living facility or in a hospital.

Think about the pros and cons for you of receiving hospice care in each of these places. If it's not clear, take the time to write down the pros and cons on a yellow pad, putting the pros on one side and the cons on the other. Some things to think about are:

At home

At home you would be surrounded by your things, your memories, your family, and your pets. You could look at the view you see on a daily basis.

You will receive the same medical, spiritual and emotional care you would receive in a hospice or other facility, although perhaps not as frequently. All the hospice team is geared to visit patients at home.

You will receive daily care from family and friends - which could be both a blessing to you and a burden to them.

Expense is minimized. There may be expenses not covered by insurance.

Can your home be set up for any equipment that may be needed to keep you comfortable? Do you have family members or friends who could learn how to use medical equipment if any is needed?

A nursing home, assisted living facility or a hospital

You will be an institutional setting, away from your home. Your room can be personalized with photographs and momentoes, but it will not be home.

Depending on its location, the facility may be difficult for family and friends to visit. There may be restrictions on young people visiting - and pets.

Unless there is a separate wing, you will be subjected to the noise and hubbub of a health care facility.

On the other hand, care is available 24/7 at the ring of a bell. Professionals and volunteers will provide day to day care instead of family and friends.

A hospice

A hospice is likely to be a more quiet with a more peaceful atmosphere than a hospital. You can get care 24/7 without having to rely on the people closest to you.

Ad comfortable as hospices can be, you won't be home.

  • In a hospital where the resources of the hospital are immediately available if you need them.

As you think about your choice, consider the following results of a According to a study by Joan M. Teno, M.D.and others, reported in  the Journal of American Medical Association in January 2004: "Many people dying  in institutions have unmet needs for symptom amelioration, physician  communication, emotional support, and being treated with respect. Family  members of decedents who received care at home with hospice services were more  likely to report a favorable dying experience." 

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Step Three: Discuss your health status and treatment/care options with your doctor.

Presumably it is your doctor who has given you an indication that you have a short life expectancy. If you have a question about the opinion, seek a second opinion.  

Your doctor can provide valuable information and advice about your choices, and the type of services you may require.   

Some doctors may be hesitant to discuss the subject of death and hospice care, or may not be knowledgeable about hospice services.

Your doctor may continue to play an active role in your care, and can help to establish and/or over-see your plan of care with the hospice organization.  

If either you or your would like more information about hospice and the services available in hospice care, contact the National Hospice and Palliative Care Organization helpline at 800.658.8898.  

Step Four: Discuss the hospice option with your family and loved ones.

The choice whether to stop treating your condition and start hospice care is yours and yours alone to make.

However, if you choose hospice care at home, your family and friends will likely play a major role in supplying your day-to-day care.  Although this presents a rare opportunity for  bonding, and the sharing of a life experience in the comfort of home, providing the necessary care can at times be difficult, frightening and stressful. Think about whether your family and loved ones are up to the task.  

If you don't have an adequate team, are there volunteers available to help in the hospice process? For example, numerous religious organizations play a pivotal role in supplying voluntary services to hospice patients.  

If you need to supplement your care with paid workers, are home workers available? Will insurance pay for them? If not, can you come up with the resources or borrow the money from family or friends?

Step Five: Speak with a mental health professional and/or your religious or spiritual advisor if you have one.

Many experts recommend that you consult a mental health therapist, such as a psychiatrist, psychologist, or social worker before deciding to enter hospice care. 

Discussing end-of-life issues can be difficult. Open communication can reduce stress, fear of the unknown, and strengthen your coping skills.   

If you have one, this may also be a good time to consult with your religious or spiritual advisor. In addition to help with the decision, some people find great strength and comfort in their religious or spiritual beliefs during this time.

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More Information

Spirituality

Step Six: Decide how you will pay for hospice care or get it for free.

  • Most health insurance covers hospice care.
    • If you have private insurance, look for words such as "Hospice", "End of life" or "Palliative Care"
    • Medicare: both Original fee-for-service Medicare and Medicare Advantage policies cover hospice care.
    • Medicaid covers hospice care.
  • If you are not insured, and paying for hospice care is difficult, look at our information about dealing with a financial crunch. It will show you how to maximize your assets and minimize your debts. If you're not up to it, ask a caregiver to do the work for you.
  • Free hospice care is available if you aren't insured and can't afford to pay.

Each of these subjects is discussed in more detail in the articles mentioned in "To Learn More"..