Archive for category: End of Life

If you receive a terminal diagnosis, you may be shocked or not, but one thing is very clear, you have some important decisions to make. Others can advise you and/or express their concerns, but ultimately it is you, and only you, who must decide what course of action to take. Do you want to try anything and everything available, both conventional and unconventional? Or, is your inclination to seek hospice or some other form of palliative care? Or, somewhere in between? The decision is yours.

Remember that everyone who expresses a point of view on what you should or should not do has a vested interest. Loved ones may feel strongly about a course of action other than the one you choose. It is also important to recognize that doctors are in the business of saving and preserving lives and, unfortunately, are focused on avoiding malpractice lawsuits as well. As a result, many doctors view the option of palliative care or hospice as a personal and professional failure and therefore do not introduce this option readily. Instead, most doctors are inclined to pursue ongoing medical treatment to slow the progression of the disease.

Here are several things to keep in mind when talking to doctors about a terminal diagnosis.

1. Before going to the appointment, remind yourself that this is your body, your life that you will be talking about. You have a right to your own point of view and your own beliefs and preferences regarding the end of your life’s journey.
2. Make a list of everything you want to discuss with the doctor ahead of time — all your questions and concerns.
3. If you haven’t already done so, be sure to appoint a Health Care Proxy to take charge of honoring your wishes if and when you are not able to advocate for yourself. If possible, have that person with you when you talk to your doctor. If they are not available, be sure to have someone else with you who can provide emotional support, take notes and help you to remember everything you wanted to discuss with the doctor as well as what the doctor has to say.
4. Take charge of the conversation. DO NOT let the dynamic be that of a one way conversation between a demi-god doctor and his or her patient. Doctors are neither gods nor magicians.
5. Before discussing what the doctor can or cannot do for you, take the time to share with him or her your personal beliefs and values about death and dying. If you have a Healthcare Proxy, Living Will and/or have filled out a Five Wishes form, provide your doctor with copies and review them together. This is your opportunity to inform your doctor of what kind of medical support and procedures you do and do not want and under what circumstances.If you haven’t already done so, legally document your wishes using the above mentioned forms. Be sure your documentation is in accordance with the laws of the state in which you live. Go to your state government website to get current forms. If you are interested in using the Five Wishes form, be sure it is legally recognized in your State. You might find this website helpful.
6. Your doctor is an essential resource for you for both information and treatment. Ask your doctor to review your prognosis and the alternative forms of treatment available. For each protocol, ask the doctor to explain the risks, benefits, side effects of treatment and the probabilities of success or failure as well as a definition of what success or failure would look like and the probable time line.
7. Throughout your discussion, remember there is no such thing as a dumb question and you are entitled to whatever it takes for you to feel well informed to make a decision that is right for you.
8. Take your time. The doctor may be busy, but this is your turn and your life and you deserve your doctor’s full attention.
9. If your doctor does not bring up the topic of hospice or palliative care, do so yourself. Ask your doctor to explain his or her point of view of these services as well as what he or she believes would be your probable future should you choose to forgo further medical treatment and seek immediate palliative care.
10. If you need more time to make a decision, honor that. Don’t let anyone rush you. Once you have made up your mind about how aggressive or not you want your treatment to be, tell you doctor and be sure you have his or her full support of your choice. If not, you may need to find another doctor. If your choice is to go the route of hospice or palliative care, ask your doctor for a referral. Palliative care is not a death sentence. It is a matter of foregoing further medical attempts to prolong the duration of one’s life through medical interventions. At the same time, it is surrendering into the care of professionals who are dedicated to providing you and your loved ones with comfort and support for the remainder of your life’s journey. I often refer to my personal experience with hospice when my mother was dying as that of being abducted by angels. It was an extraordinary blessing. I only wish we had chosen that path sooner.

It is remarkable how many people with a terminal diagnosis report a heightened sense of being alive for the remainder of their journey. It is my wish that those of you facing a terminal diagnosis embrace your journey, using your remaining time to share yourself with your loved ones and to bring peace, balance and completion to your life.

If you would like to know more about me and my work, please explore my website here.

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While there are times when the motivations of family members for asserting their particular point of view regarding the “well being” of a critically ill loved one are self-serving at best, more often the motivation is love. Yet, terrible things are done in the name of love and the dynamics of power and influence that can develop among family and loved ones can be shocking. All too often, tensions escalate as judgments and discord fester, while no one knows how to step forward and lance the family wound by talking honestly and respectfully about differences of opinion and differing styles of response to the situation. Frequently, childhood politics surface and you suddenly find yourself the seven-year-old kid who used to be bullied by her older sister.

While everyone might sincerely believe that they all have the patient’s best interest in mind, they may have diametrically opposed views about what that would look like and how it is to be accomplished. Unfortunately, all too often family members polarize against each other behind the scenes rather than uniting in support of the patient.

Here are some guidelines to help families navigate these stressful and emotionally challenging times.

Respect the patient’s right to make his or her own decisions as long as deemed mentally competent.
Recently, a client shared her family’s drama around their terminally ill mother. Behind the scenes, some family members are under the impression that mother is depressed and needs antidepressants and have emailed her doctor urging him to prescribe them. Others are concerned about drug interactions and over-drugging mom and perhaps masking feelings that she needs the opportunity to process. When I asked what the mother wanted, my client didn’t know — no one had asked her. They were too busy campaigning for their point of view behind her back.

Be sure that the patient designates a health care proxy before being deemed mentally incompetent.
The person who is appointed as the patient’s health care proxy is charged with the responsibility to make all decisions on his or her behalf regarding health care. A client told me that her father was the health care proxy for her mother. However, he was terribly uncomfortable dealing with death and dying. The choice of who to appoint should not be primarily governed by the person’s rank in the family pecking order. Rather, the patient should thoughtfully decide based upon who is most able to communicate comfortably with the patient about his or her health care situation and to advocate for the patient with doctors, nurses and caregivers. If, for example, a family member holds a strong personal or religious belief that would prevent him or her from following the patient’s wishes, they should not serve as health care proxy.

No matter how strong your opinion, that doesn’t make you an expert.
If you are a family member with concerns about the treatment protocol and care being given to your loved one, address it either with the patient and/or the family member who is managing the patient’s care. Feel free to express your point of view, but respect the right of the person who is making the decisions. Be careful not to make others wrong for not agreeing with you.

Clarify, agree upon and respect a pecking order for the flow of information and influence.
Whoever is primary caregiver and/or health care proxy should be respected as the one who has the most up-to-date knowledge about the patient’s condition and needs. If you really want to demonstrate your love for the patient, than do everything you can to support this person in caring for your loved one and in keeping communications clean and above board within the family.

Avoid the temptation to judge and talk about each other behind backs. If you have a problem, address it directly with the person(s) involved.
Having a loved one who is critically ill is stressful enough. Do not make matters worse by bringing your personal animosity toward another family member into the situation.

Handle your emotional needs on your own. Don’t act them out around the patient.
It is not uncommon for relatives who live at a distance to try to overcompensate for their absence and perhaps guilty feelings by playing the hero or making a larger than life impact on the situation. It is important to be ruthlessly honest with yourself about how you feel and to be, first and foremost, respectful of the patient’s needs and the normal routine that has been established for the patient’s care.

For example, don’t take it upon yourself to feed the patient two big bowls of oatmeal because that used to be his or her favorite breakfast. Find out what the patient is eating now and stay with that. Also, consider the possibility that if you did manage to feed him or her that much oatmeal it wouldn’t necessarily mean that it was a good idea. They may be fully aware of your need to feel helpful and be eating it to please you even though it will cause digestive distress later.

In most cases, an in-law should focus on supporting his or her spouse in handling the emotions, tensions and concerns regarding the situation and not try to be a major player in decision-making.

There are exceptions. For example, if an in-law is the primary caregiver and/or supervising the day-to-day care of the patient, then his or her knowledge of the patient’s needs should be highly regarded and other family members who visit should seek his or her guidance and insight about what is and is not in the best interest of the patient. This is especially important if the patient is living in the home of this in-law and his or her spouse or in a nearby facility while other family members are not local to the situation.

Remember that you are writing family history through your behavior. Consider giving the patient a wonderful experience of loving, united family support.

If you would like to know more about me and my work, please explore my website here.

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Last week’s article, “Facing The Holidays When You Have Lost a Loved One” seems to have struck a nerve. So, I’d like to go more deeply into this topic this week. While grief is an exquisitely private matter, in order to move on, most of us need someone to bear witness to our truth in grieving. Too many people silently suffer with their grief, while putting on fake happy faces for those they love. Ironically, this usually serves no one. It not only prevents loved ones from knowing that you are suffering, but it deprives you of the comfort others might offer. If this sounds familiar, I am not suggesting you unload the depth of your grief on your loved ones, but denying your own suffering is not the answer either.

I needed help with my grieving and was lucky to find that our local hospice offers free grief counseling to those who have lost a loved one for the first eleven months after the death. It wasn’t that I needed someone to advise me about what to do, but rather that I needed someone I could tell my truth to — the good, the bad and the ugly. I needed someone to bear witness to me, stripped naked of all pretense moving through one of the most difficult experiences of my life. I needed someone to do that without judging and rejecting me or telling me that I should do this or that or the other thing — I needed someone’s compassion. I needed another human heart to know and to care about me and about what I was experiencing. For me, that didn’t need to be a loved one. It was easier to share my truth with a professional stranger.

Another source of support came to me from religious and spiritual teachings. As an ecumenical minister, I do not espouse any particular religious tradition, but have drawn great comfort from many different traditions. For example, I was raised Christian, and have often called upon the phrase “I caste my burdens on the Christ within and I go free” to help me through those experiences I don’t seem to be able to bear alone. (If the word “Christ” doesn’t work for you — substitute another word or reference point that does.) This action reminds me that I have resources that I often forget to draw upon. By opening to the presence of the divine, I can often surrender to that which is beyond my ability to understand or cope.

Buddhist teachings have also informed my understanding of life and death. They have helped me to see death not as a moment, but as an ever present process of transformation in the life of every sentient being. Each word or sentence I write is born and passes on. Its life continues only when it touches the hearts and minds of others. Similarly, each moment of our lives, each day, each meal, each relationship, each flower is born, lives and eventually dies — except in our memories.

Last week, one reader emailed me about how she and her daughters have found a way to bring the joy back into Christmas after her husband and their father died unexpectedly a year and a half ago. She wrote that as they headed into the holidays last year and again this year, they didn’t feel like celebrating and found no happiness in the idea of buying each other gifts that none of them needed. So, they decided to create a new family tradition and chose to anonymously find a local family in need through a social service agency and help give them a happy holiday. Having the chance to help families going through some very hard times has brightened their own holidays and, as she wrote,

Doing this in my husband’s memory has given us a positive way to honor this immensely kind man and loving, devoted father. It also gives us some badly needed perspective and reminds us that we need to be thankful for what we had and what we still have and that, as much as it stinks that they’ve lost a wonderful father and I’ve lost a loving husband, we each had a loving and close relationship with him, happy memories, a lot of laughter and a lot of life lessons that we will carry forever.

I think the process of grieving, particularly during the holiday season, eventually brings us to the realization that it is a matter of personal choice to either die inside from our grief or to lift our hearts up in gratitude for having loved someone so deeply — for having been blessed by his or her presence in our lives.

So many people try to avoid grieving and attempt to carry on with life as usual. But there is no “usual” after a dear one has died. We need to grieve. If we don’t, if we push the grief deep within us and refuse its expression, it will deaden us to the rest of our lives. Then there are two deaths, not just one. And, if you really think about it, that’s probably not what your loved one would have wanted for you.

There is a funny thing about human nature that we take a particular comfort in knowing that other people suffer too and that some appear to carry bigger burdens than our own. And sometimes when we are feeling particularly sorry for ourselves, we encounter a brilliant brave soul who inspires us to raise our heads high as we carry our own mixed blessings of life. While not specifically about the holidays, this video is a magnificent reminder of the resilience of the human heart.

No matter whether our burdens are heavy or light, may we all be kinder to ourselves and each other this holiday season.

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.

I am deeply grateful for the outpouring of compassion as well as the wealth of information I received from readers in response to my recent post, “Why Hospitals Are the Worst Place to Be When You Are Sick.” The spread of infections in hospitals has reached epidemic proportions. In this followup, I want to share some of the resources that were shared with me in emails from readers.

The Centers for Disease Control and Prevention (CDC) have identified hospital-acquired infections as the fourth leading cause of death in the United States. The CDC reported that in 2002, nearly 100,000 people died with a hospital-acquired infection (HAI), while an estimated 1.7 million people became infected. All in all, more people die per year in the U.S. with an HAI than from AIDS, breast cancer and car accidents combined.

A report published by the CDC in 2009 estimates that HAIs cost the U.S. healthcare system between $28 and $33 billion per year. Costs are such that Business Week recently identified “stopping infections in hospitals” as one of the top five methods for controlling healthcare costs.

Despite attempts to control the spread of infection, HAIs continue to wreak havoc in U.S. hospitals. The Agency for Healthcare Research and Quality (AHRQ) is the lead Federal agency charged with improving the quality, safety, efficiency and effectiveness of our healthcare. The 2009 AHRQ National Healthcare Quality Report established that hospital-acquired infections are “the most common complication of hospital care.”

In describing the scope of this problem, one reader wrote:

These infections are what’s known as antibiotic resistant pathogens or superbugs. They include Staph, MRSA, C. Diff, HIV, herpes, VRE, e. Coli, Salmonella, Norovirus, Avian Influenza A, Listeria, Acinetobacter, Rhinovirus and others. These pathogens are becoming more prevalent throughout the entire world than one could imagine. We are on the doorstep of growing a worldwide epidemic with Hospital acquired infections (HAI’s) rising at an alarming rate. A new one called NDM-1 that is believed to have originated in New Delhi was discovered mid-2010 and has now spread into many countries, killing hundreds of people. But the scary thing is that there may not be an antibiotic to kill it. So what do you do, then, when there are no successful antibiotic treatments?

New Technologies

Thankfully, the answer may be found in some of the new technologies that are being developed to combat hospital acquired infections. As one reader explained:

The World Health Organization (WHO) and the Centers for Disease Control (CDC) insist on hand sanitation at bedside in acute care facilities, each and every time healthcare workers are about to be touch the patient or his surroundings, because the hands carry infection-causing pathogens which must be inactivated to assure patient safety. The current approaches — hand washing with soap and use of alcohol rubs — have limited germicidal effectiveness, take too long (minutes for hand washing, 30 seconds for rubs) and irritate the hands due to persistent contact dermatitis, so they cannot be practically used in the WHO defined mode. Moreover, no supplier to date has come up with a means to re-sterilize gloved hands, after donning and during use, which are also vectors for transmission of dangerous germs in both the OR and the ICU. This remains an unbroken infection-causing pathway.

Here are three organizations bringing forward new technologies:

Germgard Lighting, LLC . Germgard’s technology pipeline enables a multi-tiered approach to infection prevention. Included are a UV-C technology; cost-effective bare and gloved hand sanitation process; a gas-based, room temperature medical instrument sterilization process; as well as new surface cleaning and air sterilization technologies.

IV-7 Ultimate Germ Defense. This hard surface disinfectant is currently being tested at John Hopkins Hospital. The technology is based on development of a new molecule claimed to be an effective, safe and non-toxic method of eradicating surface contaminants. The company claims that it:

• Provides 24-hour residual killing ability
• Will be awarded a Level 4 Toxicity Rating from the US EPA (no other product has received this rating in over 30 years)
• Will be validated that all the bacteria, viruses and fungi cannot become resistant to it.

Bio-Intervention Specialists . This company is dedicated to saving lives and reducing the costs associated with hospital infections. They have just received EPA registration for a new disinfecting technology that they claim is less toxic than toothpaste, environmentally friendly, yet powerful enough to kill even the toughest microbes (such as MRSA and C. diff spores) found in hospital environments. Third party efficacy and toxicity testing over the past two years has demonstrated that Electro-BioCide is entirely different from commonly used disinfectants because its kill mechanism is electrical, not chemical. As such, third party testing has demonstrated a complete kill of microbes such as MRSA and Pseudomonas in less than 30 seconds. This greatly reduces the chance for the mutation of organisms.

Patient Advocacy Resources

The Informed Patient Institute . This is an independent nonprofit organization that provides credible online information about healthcare quality and patient safety for consumers. They rate the usefulness of online health care report cards, starting with nursing homes and physicians, and provide tip sheets about what to do if you have a concern about quality in a hospital, nursing home or physician’s office.

Consumer’s Union’s Safe Patient Project. This group seeks to eliminate medical harm in our health care system through public disclosure of health care outcomes (such as hospital-acquired infection rates and incidents of medical errors) and information about health care providers (such as complaints against and license violations of physicians and hospitals). The campaign also works to improve drug safety by ensuring that consumers have full information about prescription drugs (such as in direct-to-consumer ads and access to clinical trial results), by strengthening oversight of the FDA and by ending practices that create conflicts of interest (such as drug company gifts to doctors).

The Empowered Patient Coalition. This nonprofit organization was created by patient advocates devoted to helping the public improve the quality and the safety of their healthcare, with an emphasis on high quality information and education. For example, the coalition has developed a detailed and comprehensive patient guide to hospital care which will give consumers a blue print for interacting with the health care system in ways that are safe, successful and empowering. The consumer and the patient advocate will learn how to reduce the odds of experiencing medical error and hospital-acquired infection and understand the tremendous impact they can have on patient safety and health care quality.

Books

Elizabeth L. Bewley‘s new book, “Killer Cure: Why Health Care is the Second Leading Cause of Death in America and How to Ensure That It’s Not Yours,” is focused on driving change so that health care’s purpose stops being “to deliver tests and treatments” and starts being “to enable people to lead the lives they want.” According to Publishers Weekly, this book includes useful statistics, references, a guide for further reading and excellent suggestions for patients.

Bart Windrum‘s “Notes from the Waiting Room: Managing a Loved One’s (End-of-Life) Hospitalization” offers an intelligent and heartfelt examination of what interferes with having the kind of peaceful life’s ending that most of us say we want. This is a constructive, engaging and challenging critique of the institutionalized confusion around end-of-life goals, deeply held values and biotechnology.

If you have additional resources you would like to share, please do so in the comment section of this article, so others may learn about them as well.

If you would like to know more about me and my work, please explore my website here.

Also, if you know anyone who might get value from this article please email or retweet it or share it on Facebook.