Every family member feels the “elephant in the room”: What happens if there is a major crisis with my loved one? How will we manage that? Is the whole family together in decision making if something drastic happens? Is moving our loved one out of their home the only option?  What if they have a medical crisis?

 When a crisis happens such as a fall or other medical emergency, it’s very easy for emotions to escalate. People deal with crisis in different ways, and we often don’t have the tools or knowledge necessary to move forward. Things to consider are what the family members want for their loved one and what the loved one would want for themselves. This is where a professional can help.

  Here are some steps to take when dealing with a loved one in crisis:

  Stop and take a break

 When emotions are high, it’s time to take a break to allow everyone to cool down. Having said this, it’s not enough to just give everyone some time. An action plan for moving forward is needed. Once the family agrees on another time to meet, the next step is to list the information that the family needs, and research what is available in order to develop an action plan.

Develop an action plan  

 As emotional as these types of situations can be, it’s important to try to be as business like as possible. Once the family has decided on a time to meet, family members should decide on who should do what when it comes to researching the information that is missing and bring this back for discussion at the next family meeting..

 For example, if a loved one is prone to falling at home, it doesn’t mean that the only option available is to have them move into more supervised care. Other measures such as adapting their home to make it more fall resistant, hiring some personal support, or outfitting the home with passive monitoring, can give families peace of mind and preserve independence.

 A Professional Health Navigator is well positioned to do the research necessary and to meet with the family to present available options. Involving a professional helps the family to keep their focus and helps stay on track to developing a plan where everyone can agree.

  Involve your Loved One

  Too often in the rush to solve a situation, people forget to really talk to the one person who is affected most by the decision. By including your loved one in the discussion whenever possible about what is going on and what options are available, you allow them to participate fully in what is happening and help shape the solution to their satisfaction. Ideally having such discussions earlier about their desires while healthy can save much frustration and heartache for everyone.

 Although crisis situations can be difficult to manage, by pulling together and getting the professional help to keep on track, everyone can feel the final decision is the best one possible.    

You have control to get the care you deserve within the health care system. Here are steps to give yourself a winning hand!

  1. Your health records are all over the place.

 Most people assume that their doctor has all of their health records in a neat and tidy file. Test results, surgical reports, pathology reports and other important details, like a change in medication, allergies or updates in a health condition can have major effects on the direction of a doctor’s appointment. The truth is, if you have switched doctors, moved to a new region, visited an urgent care clinic, or seen a specialist for medical tests, your health history could be scattered across the city, province or continent.      When doctors don’t have the full picture, they can’t give you your best options, may not be able to make a diagnosis, and could mistakenly prescribe a medication that will interact with what you are currently taking.  Having your health information in your possession in an organized format like Pro Health Navigator’s Health Narrative puts you in control and can be taken with you to appointments,   speak for you if you cannot in urgent situations, and inform friends and family members of your priorities and preferences will provide peace of mind as you.

2. You don’t want to worry family or friends, so you keep them in the dark.

  We instinctively try to protect the people we love from sadness, disappointment, fear and stress. This can be especially true when we get bad news about our health.. Unfortunately, this backfires when a sudden or catastrophic event happens, and everyone is left scrambling to get the full picture. There are countless cases where family members receive a call in the middle of the night that their loved one is ill, leaving them feeling confused, helpless and poorly prepared for what lies ahead. One of the best ways to spare your loved ones from the pressure of having to manage a sudden emergency is to have discussions ahead of time and put together a plan. Make sure to formally designate a substitute decision maker, through a lawyer or by using an Advanced Care Planning kit available at hospitals, libraries or through www.ontario.ca/publications . Have a conversation with your health care team about your preferences and inform them of who they should call if you are incapable to make decisions regarding your health.

 3. You’re talking to your doctor…about golf.  

 You could be putting your health at risk. Some of us have had the same family doctor for several years, and each visit starts with the usual “How’s the family?” chit chat. Many people use small talk when they are facing a situation that is difficult to talk about, overwhelming, or they just don’t know where to start. Unfortunately, in today’s system, you only get about 10 precious minutes to sort through and identify your most pressing health concerns.

 Two ways to cut to the chase are: go into an appointment armed with your personalized Health Narrative , prepared by Pro Health Navigators Canada,  that gives your doctor or specialist crucial information about  your most pressing concerns.  Also make sure you have done your "homework" with regards to your symptoms and concerns .  See my blog on the "ABC's of talking with your Doctor" for more information.

When working with clients as a health navigator, I commonly consult with seniors that literally have no one looking out for them. Many of them chose to not have children, or their children live away and are unaware that their parent may be in jeopardy. Although I have had the privilege to help many in this situation, how do these vulnerable people get the care they need and continue to remain independent and not be left alone and isolated?

Elder Orphans are defined as those older adults living in our community, who are socially or physically isolated and generally have no known family member or surrogate look out for them.  In a recent US study Dr. Maria Carney, a geriatric specialist, found that 25% of people over 65 fall into this category.

Elder Orphans are considered at high risk of “failure to thrive” according to Carney. This syndrome includes loss of weight, isolation, and reduced function, both mentally and physically. Some people become Elder Orphans through the death of a spouse, where after a lifetime of caring for each other, one spouse is now responsible for the duties of both people, resulting in an unmanageable situation.

When Elder Orphans enter the medical system, preliminary research shows they enter hospital sicker and remain in hospital longer. Often they are not able to communicate their medical history effectively, and have not appointed a Power of Attorney for medical care, making it difficult to know if decisions about their health care is what they would have wished. Elder Orphans, because they enter the medical system when symptoms are an emergency, encounter care that is focused on managing the emergency, rather than prevention.  Is this the best situation?

  How do you take charge?

So, if you find yourself an Elder Orphan, how do you make sure you get what you need?

• If you have not made your wishes known, creating an Advanced Care Plan is essential. If you do not have family that can represent your needs should you become incapable, look to a friend that you trust and talk with them about what you would want if you could not speak for yourself.  Once you have made your plan, make sure your health care provider is aware by giving them a copy of your plan.  A  Pro Health Navigator is able to help you to work out who might be the best choice, and explore with you what you need to be thinking about in developing your plan. Advanced care Planning information can be found at http://www.advancecareplanning.ca/resource/acp-workbook/

• Contact us to see how easy it is to get your medical information in order.  Having this information can be literally lifesaving, especially if you are not able to speak for yourself.

• Lastly, isolation can be dangerous. If you live outside of the city, consider moving where you can be part of a community that watches out for each other, and where medical care is more easily available. Take advantage of services and technology available to keep you safe and independent.

 

 

 

Let’s face it, we all sometimes avoid going to the doctor. It’s not fun. You’ve got that nagging symptom that is bothering you and you know you should make an appointment, but you avoid making the call. You don’t know what to say to get your message across. You feel that once you get there, you won’t get the attention you need and will leave feeling unheard and frustrated. So why bother?

 Some of you have that other nagging voice – be it a spouse or children that are pushing you to go to the doctor. They fear it is something sinister, so for their sake you make the call. The appointment is set for Monday. Now how do you get ready for it?

 1. Prepare your history : Think back as completely as you can to when the symptom started. Is there anything that you do that aggravates it? Makes it better? Any over-the-counter medications help? Write down what you remember in a logical way, and if possible take a copy to give to your doctor so you both have one.

 2. State the facts : When at the appointment, use your paper as a guide to outline what is going on, being as clear as possible. Your doctor will appreciate the time you have taken to prepare and will have time to ask further questions to get to the bottom of what might be happening.

 3. Keep calm and don’t leave without a plan : We are all human, and sometimes emotions can be on edge when we don’t know what’s going to happen next. It can be easy for an appointment to run off the rails where no one is satisfied, and important tests might be delayed. Try your best to state in an assertive way what you need from your doctor. If you have trouble hearing them when they are looking up your results at the computer, tell them. Ask for them to explain things clearly so you can take notes. Make sure there is a plan in place for going forward, and follow up on this in the days ahead. Have someone with you, be it a family member, friend or Professional Health Advocate (PHA) who can talk the medical jargon and make sure you get the care you deserve.

 Trust your gut and make that appointment if you feel something is going on. And remember, going is not as bad as not knowing.    

 To receive our top 10 ways to improve your health care experience or to learn more about how we can help you create your Personal Health Record, email us at info@prohealthnavigatorscanada.com.

Why Did I become a Health Navigator Part 2.

Once Jean was admitted, and I connected with the medical team (by coincidence the same team that had seen my mother that morning), I journeyed back to my own mother’s  room to be with my family, having been prepared by the nursing team about what to expect at the end of life. What came next was a complete surprise to all: After being unconscious for more than 10 hours, my mother sat up and started to talk as if she had awakened from a nap.
 

The next weeks were a roller coaster of emotions: elation that my mother has survived the stroke, the opportunity to let her hold her granddaughter, and for me to confirm her final wishes, as we both knew she would die soon. My husband and I experienced happiness that Jean was stabilized and comfortable and able to see her new granddaughter a few more times.

 Jean and Lily were both admitted to the same ward, and initially were in different rooms. This meant that, although the families knew each other intimately and were great friends, we would have to visit each “mother” separately. When I approached the Nursing staff to request both Mothers to share the same room, I was told flatly that they worried about potential medication errors as their last names were very similar. It took a meeting with myself and the Medical Director, who fortunately was enlightened enough to authorize moving them to the same room saying that the Nursing staff would just need to “figure out” how to overcome potential medical errors in order to have both Mothers in the same room. Once the move took place, it added immensely to the quality of our visits and also allowed both of them to share in some really special time together.

 As their health further declined, they were transferred to a palliative care ward at a convalescent hospital where, I suspect due to the intervention of the same Medical Director, they again shared a room without question.  My sister-in-law shared stories of her having ice cream with both mothers while watching episodes of Raymond and them all laughing.  Jean died about two weeks after entering the palliative care ward, and my mother 16 days later. With both women’s situations, it required intervention by me with the medical team a number of times in order to allow them to achieve what would be considered a “Good Death” that was free of pain and suffering, where their families were near and both Mothers knew they were loved and cherished.

This experience allowed me to see first-hand that there are many variables that contribute to good quality of life as one begins the last weeks and hours of existence. Health care teams assume an ethical charge to manage the patient holistically which is the cornerstone of good health care. Unfortunately this can be challenging to achieve due to the tensions that can exist with available time and competing demands within the health care system.  It is in really listening to the patient and family, knowing where their heads are “at”, and truly “walking with them” that respect is paid the life lived, and helps with the family’s bereavement that follows. Experiencing this, despite how surreal it seemed at the time, is in large part why I am Health Navigator.

 I believe Pro Health Navigators is a necessary service that helps patients to be heard when they interact with an ever more complex health system, a system where health care teams are increasingly pressured to provide good service in less time with less funding.

Technology is truly a gift to medicine, but also can create a barrier to the type of meaningful communication that both patients and families crave. I hear repeatedly from clients and families the disconnect they feel with their health care team.  A Guide is desperately needed, someone to give them the confidence and peace of mind during their health care journey.  By being “in the moment” with my clients, our service provides this.