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A Conversation of Choices

Thursday, February, 10, 2011

When a loved one receives the diagnosis of a life-limiting illness, it is a difficult time for all involved. While the patient must come to terms with the finality of life, you and other family members and friends must also confront the reality of the impending loss.

In this situation, it’s important for you, your loved one and their physicians to take the opportunity to discuss all options for care, including hospice care and advance care planning, before your loved one reaches the final stages of life.

While this conversation may initially be difficult to approach, in the end, it will lessen the emotional burdens of all involved by restoring a sense of control and taking away the anxiety of uncertainty.

Where do we begin?

The first step is making sure you have all the facts to help your loved one make informed decisions.

Once you have the information you need, approach the conversation carefully. Choose a location where your loved one feels at ease, and make sure you allow enough time so that you aren’t rushed or interrupted. Include as many family members in the discussion as is comfortable.

Everyone faces end-of-life challenges in their own way, so remember to be sensitive to the emotions and concerns of all involved and to keep an open mind as you listen to the needs and desires your loved one expresses. It may require more than one conversation to reach a decision, and that’s okay. What’s most important is that everyone ultimately understands and feels at peace with the outcome.

Remember, too, that this dialogue may continue throughout your loved one’s final weeks and months. Every decision you make is a two-way street, and no choice is irreversible. If your loved one is not yet ready to begin hospice care, you can always revisit the conversation later, especially if their condition changes. Likewise, starting hospice is not a commitment, and your loved one can change their mind at any time.

Who should start the conversation?

Often, when a physician recognizes that a patient has reached the final stages of the illness, he or she will introduce hospice as one of the end-of-life care options that are available.

However, there’s no need to wait until your loved one’s physician broaches the subject to begin the conversation about hospice. If you feel hospice might be a good choice – whether now or in the future – don’t be hesitant to share your thoughts with your physician and ask any questions that may be on your mind.

You can also make a referral to hospice, and the intake specialist can provide more information to help you determine whether it’s the right choice for your loved one. The hospice agency will then work with your loved one’s physician for certification into our program.

What is hospice care?

Hospice is a philosophy of care focused on helping the patient experience peace and comfort in their final days while offering support to their loved ones.

Simply put, hospice is a philosophy of care focused on helping the patient experience peace and comfort in their final days while offering support to their loved ones.

Hospice care may begin when the patient chooses to discontinue curative treatment, typically when their prognosis is six months or less, and can be provided wherever a patient calls home – whether a private residence, assisted living community or nursing home. 

Taking a holistic approach, the hospice care team works not only to manage symptoms and minimize pain but also to address the emotional and spiritual needs that are part of the end-of-life experience for the patient and their family. 

Hospice offers comfort care to patients of all ages who are coping with life-limiting conditions such as cancer, Alzheimer’s, Parkinson’s, ALS, diabetes, emphysema, multiple sclerosis, HIV and AIDS as well as cardiovascular, kidney and liver diseases.

Hospice myth vs. fact

One obstacle that prevents many families from considering hospice care sooner is a lack of understanding about the philosophy and practice of hospice. These misconceptions can cause fear and avoidance that keep the patient from experiencing the best possible quality of life.

Some equate hospice with a lack of choices or with giving up hope. Others are afraid that their loved one will receive no further medical care. Conversely, some families are concerned that treatment for pain will leave their loved overmedicated and unable to think or communicate clearly. Another common source of anxiety is having to part ways with the physicians with whom they have already developed a relationship over the course of the weeks or months of treatment. Worst of all, some fear that choosing hospice will actually hasten death.

Fortunately, these are only misconceptions, and in fact, nothing could be further from the truth. 

Hospice patients continue to receive medical care. In fact, the patient’s physician remains an important part of the hospice care team, and nursing staff are available 24 hours a day to address any medical needs that might arise. 

The patient and their family play an integral role in determining the course of treatment.

As the focus of care shifts from curative efforts to the management of symptoms and pain, the patient and their family play an integral role in determining the course of treatment. Hospice nurses carefully monitor the administration of medication and work with physicians and the hospice medical director to find the optimal balance of comfort and alertness to allow the patient to get the most from every day. 

While hospice care is not intended to prolong life, it is very effective in maximizing the quality of life during the days remaining, allowing the patient to be at home surrounded by the comforting presence of family and friends. 

What are advance directives?

Advance directives come in two main forms: a living will and a health care power of attorney.

Another important aspect of end-of-life planning is making sure that your loved one has advance directives in place in the event of a medical crisis that leaves them unable to speak or make decisions for themselves. Advance directives come in two main forms: a living will and a health care power of attorney.

A living will documents the medical treatments your loved one would or would not want at the end of life. Special consideration should be given to life-prolonging measures such as resuscitation, intubation, hydration, feeding tubes and blood transfusions, and your loved one should provide instructions regarding which of these types of treatments or procedures they would like administered or withheld.

A health care power of attorney designates a person of your loved one’s choosing to make health care decisions on their behalf, using the living will for guidance in determining what they would have chosen for themselves. 

Advance directives can be created without a lawyer and with relative ease. One of the simplest ways to do this is by completing the Five Wishes document, which meets the legal requirements of 42 states, including North Carolina. The Five Wishes document can be changed at any time, following the directions provided. 

Once the advance directives are in order, make sure to provide copies to your loved one’s doctors, designated health care agent, attorney and family members.

No wrong answers

End-of-life care and advance directives are complex issues, but be assured that there are no wrong answers to the questions you will address. 

While the conversation around these topics can be difficult, take comfort in knowing that it is often a relief to the patient to fully understand all of the options available to them. One of the greatest gifts you can give to your loved one is empowering them to take control over how their remaining days will unfold. 

By making informed decisions together as a family, you can help to ensure that your loved one’s final days are lived in dignity and peace and that the time you have to share is of the best quality possible.

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